thyroid misery

rOBeRt frETt

penderella wrote: »

No GP won't prescribe, but would be happy to follow the lead if the Endo does.
The problem is i really like the GPs in our practice, i have asked all the local pharmacists if there are any GPs prescribing NDT and so far they all have said no.

I think this is a bit strange that the percentage of Irish doctors willing to prescribe Natural Thyroid hormones is so low. - for anyone who has never heard of it, natural dessicated thyroid or NDT has been in use since the 19th century it's derived from pig thyroid glands which are dried (dessicated) and ground into powder and then made into tablets- so the tablet contains not just T4 like synthetic thyroid medication, but also T3 T2 and T1 - so in fact- synthetic thyroid hormones are one course of 'treatment' or 'protocol' and natural thyroid is another approach some people report they do much better on the natural thyroid approach.

I asked my doctor - "what's this NDT stuff?"
his reply was - "do you want to try it?"
I told him I thought I was going to get a lecturer for even asking- he told me that when he was doing his degrees in the Sixties there was even Two camps- those who believed in the efficacy NDT and those who adopted the new approach based on blood tests (and nothing else)- he said he bases the success of treatment on how the patient feels as well as taking blood tests for diagnostic purposes.

In a recent survey, patients of all backgrounds where asked about the effectiveness of the medical protocol used to treat them. the biggest group of unhappy patients where hypothyroid, a whopping 40% reported ongoing unresolved symptoms long after treatment was initiated.

As a qualified scientist myself my opinion is that the medical establishment has conjured up a biased diagnostic for the treatment of thyroid disorders which leaves many patients wanting. People aren't getting back to health because of the dogmatic decree of endocrinologists- the goal of that treatment is to bring down the TSH - nothing more

rOBeRt frETt

Here is the survey I referenced

The idea for TPA-UK to compile a Hypothyroid Patient Survey originated from the Medical Advisory Service (MAS) to whom we are grateful. This survey was created by members of the TPA-UK Forum, who contributed all of the questions. This survey was created 'in common' for a 'common good' and was was peer reviewed by Dr Barry Durrant-Peatfield, Patron and Medical Adviser to TPA-UK. The final version was agreed with all members before it was passed to NSM Research (Market Researches) for analysis and presentation, who then drew up the questionnaire for distribution. Sheila was awarded a grant of £4900 from UnLtd Millennium Awards to be used to meet the costs of dissemination. She chose to fund the cost of the survey through this award. We would like to thank the all who took part in its creation with especial thanks to Louise who simplified some of the final results by translating them into graph form. We would also like to thank everybody for their patience during the processing of the raw information.

In this survey of 1500 hypothyroid patients, which was undertaken in 2005-6, the dissatisfaction of many patients is highlighted. Of all respondents, 93.8% (n=1407) had not been told of medicines other than L-thyroxine by their medical practitioner. 38.8% (n=768) felt they had “not been dealt with very well” or “not very well at all” by their doctor whilst seeking a diagnosis of their symptoms; 233 (15.5%) had given up paid employment; 300 (20%) had taken time off work as a result of thyroid illness; 500 (33.3%) felt their close relationships had been affected by thyroid illness and 632 (42.1%) had stopped or altered their exercise routines as a result of their symptoms. When asked of those patients undergoing L-thyroxine therapy, “Do you feel that you have fully regained your optimal state of health?”, 1176 (78.4%) Answered “No”.

Full Survey HERE

LegacyUser

Hi,

During blood tests in November my TSH came back as 4.8, seeing as there was a family history of thyroid disease (Mother, Aunt and Grandmother Hyperthyroid) I had a test for antibodies done. This came back at >1000. I'm told I will not be treated until my TSH is at least 11, and to come back for a blood test in six months

After I found out I decided to begin exercising regularly to hopefully boost my metabolism, When I began in early January I was doing 100 push ups and sit ups every second morning, circuit training in the mornings if I had the time.
Now I have no energy... Even the thought of 1 makes me tired
I'm involved in a not really physical sport, but have literally no energy to do it, and have to pull out of competitions because holding the same position makes me back sore about a third of the way in. I've begun to go to a fitness class for motivation, plus I usually get a huge buzz from exercise, but the last time I went, I left the class feeling absolutely worthless, the exact opposite of usual.
I'm so stressed, I've begun to cry randomly. I've even started drinking coffee because it makes me feel normal and gives me energy for a while

I'm not sure what to do, I'm really struggling to keep up with college work. I was thinking about asking for another test?
Is it likely I'll be at 11?
They said that I'm not really showing signs of it - I've only put on about half a stone in weight... And my hair isn't falling out.
I've been to both college doctors about it, and neither will treat, they say my thyroid is working and we should let it be...

goodgodholmes

Hey guys, quick question -

I suffer from congenital hypothyroidism (the kind you're born with, no thyroid function at all). I've never known life outside thyroxine so don't really have anything to compare it to! At 22 years of age, my current dose is 125 mg/day. When I was a kid I used to have my bloods tested every 3-6 months, whereas now it's every 2 years.

I've only ever taken Eltroxin, however I have pretty much been unable to control my weight my whole life. I have a relatively normal diet and am moderately active - however, no matter what, my BMI consistently remains around the 29 mark. I have been very active in the past and been very conscious of my diet and calorie intake, but my weight always remains around the same. The only time I ever lost a significant amount of weight was when I was about 18, sick of being overweight, I went on a relatively extreme diet - walking miles a day and trying to eat under 1000 calories a day for about a year. Even still, despite the fact I was barely eating and exercising a lot over a pretty long period of time, the lowest my BMI ever hit was 24.5. As I'm sure you can imagine, the weight crept back on relatively quickly.

Throughout my whole life, no doctor has ever mentioned T3 or any other hypothyroidism treatments. I only have my bi-annual blood tests and am consistently recommended my 125mcg Eltroxin dose (which judging from other people's doses reading through this thread and the fact my thyroid function is non-existent, seems quite low!).

In my memory, I have never been to an endocrinologist (probably when I was a baby, and I often visited Temple Street as an outpatient as a child so it may have been an endocrinologist then), but it's been my GP since I was about 14 and never anything other than Eltroxin.

Do you think it's worth going to see the endocrinologist? I'm worried the doctors are going to fob me off as I've never really complained about Eltroxin before, as it's all I've ever known. I never knew there were alternatives as Eltroxin has just been a part of my life since the day I was born, and I never questioned it.

From the perspective of you guys who developed hypothyroidism later in life (and thus, probably had the good sense to read up on your options as opposed to just accept what the doctors told you as the only option for 22 years!), do you think I might need a combination of T3 and T4? Any experience of other treatments?

Did any of you find it difficult to get referred to an endocrinologist on the basis that hypothyroidism isn't that "serious"? Did you ever find you got fobbed off because Eltroxin is what everyone is prescribed?

I'm only really starting to find out about other options now so any thoughts would be greatly appreciated!

rOBeRt frETt

Hi ggh,

Wow congenital hypothyroidism! from what I've read about this very scary scenario you can thank the Gods for medical science!
- The first thing that comes to my mind from your post is your dosage level, I would consider 125mg to be a small dose for somebody with no functioning thyroid- like- your not supplementing here, but weather you have no thyroid or 10 thyroids your doctor is going to dose you depending on how much TSH is in your blood- obviously 125 was your magic number, this dosage would have brought your TSH into the acceptable range.

We regard to T3- your definitely converting Eltroxin into T3, adding pure T3 or just more Eltroxin might would speed up your metabolism but would this be dangerous? - would it suppress your TSH? - what was your last TSH by the way?

I have never seen an Endo either - you are of course entitled to see one- I was offered but declined- an Endo is going to run the same blood tests as your GP and make the same dosage requirements but it may be beneficial for you to go an see one and ask about weight loss particularly- just ask your doctor- can you refer me to an Endocrinologist please?- I have some questions. your doctor can't refuse this- you have an endocrine disorder.

from what you are describing about exercise and weight gain it doesn't take a genius to suspect your existing metabolic condition as being somewhat responsible .
do you suffer from any other slow metabolism symptoms - or dare I say it hypothyroid symptoms?
Constipation
dry hair/skin
muscle and joint pain
muscle weakness
fatigue/exhausted
brain fog
feeling cold
low temperature
weight gain (obviously)
hoarse voice

also- have you ever experienced hyperthyroid symptoms, it's doubtful on 125mg with no functioning thyroid- but would you feel hyperthyroid on say 175mg 200mg ?
in other words, of all the times you where getting your dosage adjusted did you ever feel you where taking too much with the opposite of the symptoms above e.g. diarrhoea, feeling to hot, anxious etc..

I would suggest you visit your doctor and ask for a referral (hypothyroidism is serious- especially congenital, it's just the 'cure' that's so trivial)


all the best with it
Rob.

rOBeRt frETt

OneSadThyroid wrote: »

Hi,

During blood tests in November my TSH came back as 4.8, seeing as there was a family history of thyroid disease (Mother, Aunt and Grandmother Hyperthyroid) I had a test for antibodies done. This came back at >1000. I'm told I will not be treated until my TSH is at least 11, and to come back for a blood test in six months

After I found out I decided to begin exercising regularly to hopefully boost my metabolism, When I began in early January I was doing 100 push ups and sit ups every second morning, circuit training in the mornings if I had the time.
Now I have no energy... Even the thought of 1 makes me tired
I'm involved in a not really physical sport, but have literally no energy to do it, and have to pull out of competitions because holding the same position makes me back sore about a third of the way in. I've begun to go to a fitness class for motivation, plus I usually get a huge buzz from exercise, but the last time I went, I left the class feeling absolutely worthless, the exact opposite of usual.
I'm so stressed, I've begun to cry randomly. I've even started drinking coffee because it makes me feel normal and gives me energy for a while

I'm not sure what to do, I'm really struggling to keep up with college work. I was thinking about asking for another test?
Is it likely I'll be at 11?
They said that I'm not really showing signs of it - I've only put on about half a stone in weight... And my hair isn't falling out.
I've been to both college doctors about it, and neither will treat, they say my thyroid is working and we should let it be...

you need a new Doctor, you have hashimotos thyroiditis and are hypothyroid, Doctors don't know what to do unless your TSH goes above 5, 11?? - that's nonsense. go and get another bood test and fast for 24 hours prior.
your doctor saying - you're not really showing signs of it, when your hair is falling out and you are gaining weight with thyroid antibodies of over 1000 is absolute bull**** - sorry but it makes me quite angry. best of luck

chessguy

goodgodholmes wrote: »

Hey guys, quick question -

I suffer from congenital hypothyroidism (the kind you're born with, no thyroid function at all). I've never known life outside thyroxine so don't really have anything to compare it to! At 22 years of age, my current dose is 125 mg/day. When I was a kid I used to have my bloods tested every 3-6 months, whereas now it's every 2 years.

I've only ever taken Eltroxin, however I have pretty much been unable to control my weight my whole life. I have a relatively normal diet and am moderately active - however, no matter what, my BMI consistently remains around the 29 mark. I have been very active in the past and been very conscious of my diet and calorie intake, but my weight always remains around the same. The only time I ever lost a significant amount of weight was when I was about 18, sick of being overweight, I went on a relatively extreme diet - walking miles a day and trying to eat under 1000 calories a day for about a year. Even still, despite the fact I was barely eating and exercising a lot over a pretty long period of time, the lowest my BMI ever hit was 24.5. As I'm sure you can imagine, the weight crept back on relatively quickly.

Throughout my whole life, no doctor has ever mentioned T3 or any other hypothyroidism treatments. I only have my bi-annual blood tests and am consistently recommended my 125mcg Eltroxin dose (which judging from other people's doses reading through this thread and the fact my thyroid function is non-existent, seems quite low!).

In my memory, I have never been to an endocrinologist (probably when I was a baby, and I often visited Temple Street as an outpatient as a child so it may have been an endocrinologist then), but it's been my GP since I was about 14 and never anything other than Eltroxin.

Do you think it's worth going to see the endocrinologist? I'm worried the doctors are going to fob me off as I've never really complained about Eltroxin before, as it's all I've ever known. I never knew there were alternatives as Eltroxin has just been a part of my life since the day I was born, and I never questioned it.

From the perspective of you guys who developed hypothyroidism later in life (and thus, probably had the good sense to read up on your options as opposed to just accept what the doctors told you as the only option for 22 years!), do you think I might need a combination of T3 and T4? Any experience of other treatments?

Did any of you find it difficult to get referred to an endocrinologist on the basis that hypothyroidism isn't that "serious"? Did you ever find you got fobbed off because Eltroxin is what everyone is prescribed?

I'm only really starting to find out about other options now so any thoughts would be greatly appreciated!

HHmm, how do you actually feel , ?

Has your your weight been constant , BMI can be affectedby heavy bones too. .
You may need a slight adjustment.
Good idea to have T3 and T4 and TSH tested.

But before any adjustment I would try taking my thyroixine last thing at night , and no eating after taking it.(check my prev posts)

If you eat many goitrogenic foods like brocolli and soya products (soya is also hidden in breads) your blood tests may well show T3 and T4 is fine , but its just floating in your blood and not fully absorbed by your cells ,so watch out for goitrogens ,eat them cooked only and about 4 hours after medication.

IS you diet fairly low carb or high carb,Low carb is best.
as low fat yoghurts etc, make you gain weight , its the sugar that make one gain weight as it causes insulin to spike and then its a snow ball effect.

Cold pressed virgin coconut oil 2 table spoons a instead of other oils or fats,will speed up your metabolic rate , see my previous threads,on this too
check my prev. posts for details on all the above.

goodluck
chessguy

cltt97

OneSadThyroid, as Rob said, you desperately need a new doctor. Firstly, 5 is already above the normal range, and secondely, with those antibodies you're having a serious inflammation going on. Exercising is only going to make you worse, as you are running on less energy already, so by doing exercise you're drawing on something you're already short of. You need to get medication swiftly. A friend of mine who was like you - high antibodies but reasonably "normal" TSH - was put on Eltroxin - she went to one of the wellwoman clinics, I'm not sure which one though. In any case, those two docs haven't got the first idea it seems.

LegacyUser

Hi, it's me again

Thanks for confirming what I sort of already knew about getting a new doctor. I'll look into the well woman centre

Seems like all of my symptoms have disappeared in the last day and a half. It's been amazing! I've gotten so much done, I'd forgotten what it was like to NOT have a headache!!!
Has anyone else has this?

I'm guessing it means that part of my thyroid has been destroyed releasing large amounts of thyroid hormones?
Or could the thyroiditis attack be slowing down?

penderella

I was with a Prof of Endocrinology yesterday, nice guy, but as the drug (Armour) i am taking is not licensed in Ireland he is not able or willing to monitor my progress. However he did state that i may have cealics disease, which would stop the drug (Eltroxin) i was taking from being absorbed.will do blood test to is if i'm cealic followed by a biopsy of the stomach lining. in the mean time i'm going to cut out gluten and see where that gets me.

You will love this he said "Armour will shorten your life by 3 years" " no fact based research to prove it is move effective than Eltroxin" " no evidence that a combo T3 & T4 treatment is effective"

So there you have it i am at the end of the road with the medical profession in Ireland, no one will prescribe Armour as it is not licensed by the health board.

So i really don't know what to do, i like feeling a bit better with Armour, but am not rebel enough to keep self treating and lie to my doctor.
Just a bit frightened that if i need help i will not get it and any other illness i might get will be put down to the illegal drug you have been taking.

Thanks for all the wonderful support and information you guys share.
I'm going to have a long hard think about what to do so any pointers would be gratefully appreciated.

0lddog

penderella wrote: »

........will do blood test to is if i'm cealic followed by a biopsy of the stomach lining. in the mean time i'm going to cut out gluten and see where that gets me........

Maybe leave it 'till after the tests before you cut out gluten ? ( otherwise the results may be in error )

Have you found www.coeliac.ie ?

Wyldwood

Panderella, I agree with Olddog, don't make any dietary changes until after the blood test, you would only skew the results.
My heart goes out to you trying to get a resolution to the thyroid misery. I don't know what part of the country you're in but there are a few people on this forum who have been taking natural meds. Maybe you could try one of their endos. I would travel the length of the country to find someone sympathetic. Us thyroid sufferers are treated with a total disregard by most docs (GP or consultant).
I'd be slightly wary of taking any medication for a hormonal problem without medical support. The thyroid can do nasty things to you if not properly controlled.
Best of luck and don't give up.

cyning

Penderella: I have what my endo referrs to as "peripheral resistance to thyroid hormone" and I take combination T3/T4 treatment. I've got to say I've been really lucky: I've been to 4 different endos: one was horrid: eltroxin works, are you taking your tablets, you've been tested for coeliac, are you taking your tablets! The other three have been great (i saw one when I was in uni and needed RAI as I have Graves Disease, one moved to Galway and the other is my current guy: I know its a lot!). Since I started on the T3 (it's sold as Ti Tre here in Ireland) the improvement has been amazing.

The thing with taking T3 is that you NEED to be under the care of an endo: it can affect TSH so dose has to be changed more on how your feeling rather than blindly relying on TSH results.

On the other side I'm pregnant and having a horrendous time with my thyroid in the last few weeks: I'm gone thyrotoxic. I would take being underactive and EVERYTHING that goes with it rather than being overactive, its absolutely horrendous. Normal levels in January and start of Feb then seriously downhill (or uphill I guess!). Overactive sucks.

cltt97

penderella wrote: »

So there you have it i am at the end of the road with the medical profession in Ireland, no one will prescribe Armour as it is not licensed by the health board. Just a bit frightened that if i need help i will not get it and any other illness i might get will be put down to the illegal drug you have been taking

Penderella, where are you based? There are a few doctors that do prescribe this. It is also NOT illegal. Not licensed does not mean illegal at all.

Unauthorised Medicinal Products do not have a product authorisation for use in Ireland, and have not been assessed by the IMB against the criteria of safety, quality and efficacy. Schedule 1 of the Medicinal Products (Control of Placing on the Market) regulations 2007 includes an exemption for medical practitioners to prescribe unauthorised medicinal products for individual patients under their direct responsibility, in order to fulfil the special needs of those patients.

Under this very provision I get a prescription for Erfa (similar to Armour)

penderella

cltt97 wrote: »

Penderella, where are you based? There are a few doctors that do prescribe this. It is also NOT illegal. Not licensed does not mean illegal at all.

.

Under this very provision I get a prescription for Erfa (similar to Armour)

Thanks a million for the reference,
I'm in Meath and yes willing to travel. so any gp referrals greatly appreciated.
one full month on armour now and i am feeling fantastic.
slowly raised from 30mg to to 180mg in the last month, i will hold at 180mg for 4 weeks so long as i stay symptom free, then get the bloods done and see were i'm at.
yes i have also not cut out gluten at this time it makes sense to get the blood test first.

LimerickBishop

Diagnosed NOV '09 TSH of 75. Put on 75mcg of Eltroxin. 100KG
Blood Test MAR '10 TSH of 17. Kept on 75mcg of Eltroxin. 95KG
Blood Test JUL '10 TSH of 15. Put on 100mcg of Eltroxin. 93KG
Blood Test SEP '10 TSH of 12. Kept on 100mcg of Eltroxin. 92KG
Blood Test NOV '10 TSH of 10. Put on 125mcg of Eltroxin. 91KG
Blood Test JAN '11 TSH of 5. Kept on 125mcg of Eltroxin. 90KG
Blood Test APR '11 TSH of 4.18. Kept on 125mcg of Eltroxin. 89KG
Blood Test JUL '11 TSH of 2.40. Kept on 125mcg of Eltroxin. 84KG
Blood Test SEP '11 TSH of 6.04. Kept on 125mcg of Eltroxin. 85KG
Blood Test NOV '11 TSH of 3.00. Kept on 125mcg of Eltroxin. 85KG
Blood Test MAR '12 TSH of 11.80. Put on M-F 125mcg /S-S 150 mcg of Eltroxin. 86KG

A little bit of a surprise here, but I've been working 12 hr night shifts for a while now and I had a feeling I'd see a rise. I briefly experienced chest pains and was out of breath two weeks ago after climbing up 4 flights of stairs on a night shift. Going for ECG next week to see if heart is ok, worst case scenario is angina - my uncle has it, other side from where I inherited thyroid problem.

Blood pressure was fine, Cholesterol was good at 4.7. I feel fine now. T4 was 18. Seeing the GP next week, who thinks upping my dose from Monday to Friday to 150mcg is the best way to approach it, and then get re-tested in two months.

Anyone experience this too?

Wyldwood

Went back to the Endo last week for the results of all the tests, my cortisol was in normal range, coeliac tests normal, anti-bodies ok, but Holtor monitor showed fluctuation in heart rate between a low of 57 & a high of 125 beats per minute over 24 hours. Because of this I am being referred to a cardiologist for evaluation and am really nervous that I have an underlying heart condition now. TSH was at 7.7 and FT4 at 12. He suggested upping the Eltroxin to 50 every second day from 25 daily, but I'm really reluctant to do that due to the nasty hyper symptoms. Don't know where I'm going now.

cltt97

Oh Dear! I hope it's nothing sinister but just another "side effect" of thyroid misery that is transient. I'll keep my fingers crossed for you!

LimerickBishop

Went for an ECG earlier this week, it came back fine. Cholesterol is 4.7 which is fine also, so based on this and family medical history, doctor didn't think I have Angina, which of course is great news. Test for diabetes came back negative, and I don't know why they keep testing me for this, anyone know why?

I was advised to have more vigourous exercise, but with smog levels at record highs this week here in London, I'll pass on that for now. But I might try to practice more Yoga, haven't done any in over 4 months, and I think this definately had an effect on TSH levels rising.

Wyldwood

That's good news Limerickbishop you can put your mind to rest about heart problems now. Yes I really think exercise is a very important part of thyroid management. I always feel better after a nice long walk.

hope you continue to feel well

chessguy

LimerickBishop wrote: »

Went for an ECG earlier this week, it came back fine. Cholesterol is 4.7 which is fine also, so based on this and family medical history, doctor didn't think I have Angina, which of course is great news. Test for diabetes came back negative, and I don't know why they keep testing me for this, anyone know why?

I was advised to have more vigourous exercise, but with smog levels at record highs this week here in London, I'll pass on that for now. But I might try to practice more Yoga, haven't done any in over 4 months, and I think this definately had an effect on TSH levels rising.

Limerickbishop,
good news your tests came back negative..


Diabetes is high profile especially in the Uk at the moment . So they check for that , as Endocrine issues are often related.

checking body temps is a good indicator of optimal Thyroid treatment /Medication.

Low temps can cause low blood pressure this can cause Angina symptoms/ >> Not real Angina ., But Everything slows down and mimics Angina.

This is associated with Hypothyroidism when not treated optimally.

I had this issue , it is resolved now.my temps were around 35 Degrees (too low)

I needed to make sure my electrolytes were in place ,especially magnesium potassium sodium etc ,and to bring my vitamin B12 in to the uper range.
I am quite certain my issue was from low electrolytes and low vit B12.

If the medication just passed through you for some reason,for perhaps a couple of days, without being absorbed.(stomach bug)
,it could also affect the absorbtion.of Eltroxin,and have a temporary knock on effect.

I split my dose.

My Eltroxin dose is .25 at night .50 in the morning.And some times vice -versa.

And of course at least 1 tablespoon virgin coconut oil daily to to keep my Metabolic thermal rate up.
I had fiull cardio work done(including CT scans too at Blackrock it came back fine as expected , with a calcium score of zero.


goodluck
chessguy

Ms White

Hi, I was wondering if anyone on this thread got a diagnosis of hypothyroidism with a normal TSH? I recently had blood tests done and they all came back normal including TSH which the doctor said was 2.5. He said they checked B12 and some other things generally connected to tiredness and they were all normal.

But when I read a list of symptoms of hypothyroidism I can tick almost every single one.

-Fatigue, tired all the time, sluggish
-Brain fog and lack of concentration
-Cold hands and feet
-Aches all over
-Difficulty trying to shed a few pounds though I'm not overweight
-Dry skin

From what I've been reading you can get tested for T3, T4, FT3, FT4, reverse T3 and antibodies. My question really is that if I want these tests can I get them done with my GP or would I need to go to a specialist?

Any advice would be helpful. The GP just said to me to "take a wait and see" approach as the tests are all clear and there's really nothing he can follow up on.

chessguy

Ms White wrote: »

Hi, I was wondering if anyone on this thread got a diagnosis of hypothyroidism with a normal TSH? I recently had blood tests done and they all came back normal including TSH which the doctor said was 2.5. He said they checked B12 and some other things generally connected to tiredness and they were all normal.

But when I read a list of symptoms of hypothyroidism I can tick almost every single one.

-Fatigue, tired all the time, sluggish
-Brain fog and lack of concentration
-Cold hands and feet
-Aches all over
-Difficulty trying to shed a few pounds though I'm not overweight
-Dry skin

From what I've been reading you can get tested for T3, T4, FT3, FT4, reverse T3 and antibodies. My question really is that if I want these tests can I get them done with my GP or would I need to go to a specialist?

Any advice would be helpful. The GP just said to me to "take a wait and see" approach as the tests are all clear and there's really nothing he can follow up on.

Ms White
your GP can request the tests you mention , the reverse T3 may be a bit tricky to get done but if the others all come back in range then there is no need for it in such exceptional circumstances .

Measure your morning temps as soon as you wake up,If your temps are say 36.5 degrees orally (do not have a hot drink just before ,as this can skew the results).

If under 36 degrees a few times during the week let your Doctor know about this. As it may reflect thyroid issues.

Best to use a Glass thermometer the digital ones have humour swings,
most good chemists will stock these .

If you must get a digital a digital I have found this one to be the most accurate , guess what it is one of the cheapest ones too,
from Argos
Vicks Smart Temp Digital Thermometer.

376/5634
Normal ranges are differant for us all,

while getting the test done may be a good idea
To get vit D checked and the primary electrolytes.
Magnesium
potassium
sodium
what was your B12 range ,
often when in the low catergory Doctors say this is "Normal"

Get a copy of all results they are always good to look back and reflect on .

A few years ago I had vitamin D tested Doc said results were fine , I now have those results Vitamin D was low and far to low for a person with Hypothyroidism, it needs to be in the upper ranges.

I questioned the Doc regarding this he said he Thought it did not matter so he did not mention it"
Which is B********T as vitamin D is actually a vital vitamin , it is actually a Prohormone.

Its functions are critical.

It was a similar story when they misinterpreted my Thyroid results too.
My TSh was 7 and they thought it was only a bit off and did not matter . Grrr. So it was not mentioned.

This went on for circa 6 months and I felt terrible.

Thats when I hit the books and Published medical articles.
Thats when I understood a GP is actually a General Practioneer, we expect too much from them .

But if they do not find an issue in the results their obligatory duty is to refer you to a specialist immediately.

The attitude , of shrugging shoulders and saying lets wait and see is simply not good enough, when one has so many symptoms.



Goodluck
chessguy

cltt97

I would suggest you ask for tests for FT3, FT4, TPO antibodies, B12, ferritin, folate, Vit D, cortisol. kidney function test, bone profile (this will give you all the electrolytes), glucose and lipids. the gp can request them no problem, no specialist required. and as chessguy said, ask for a print out of the results, so you can see where within the "normal range" your results are. With us hypos usually the bs and iron etc are more at the bottom of the range and we usually benefit from upping it.

Ms White

chessguy wrote: »

Thats when I hit the books and Published medical articles.
Thats when I understood a GP is actually a General Practioneer, we expect too much from them

Thanks for the comprehensive answer.

Would you care to recommend a particularly good book? Something credible so that when I say to the GP that I've been reading he knows it's more than Dr.Google that I've been reading from.
Cheers

chessguy

Hmm .. this would be place to start .


http://www.brodabarnes.org/who_we_are.htm

another good source is

http://www.westonaprice.org/metabolic-disorders/low-metabolic-energy-therapies



goodluck
chessguy

Equanimity

Hi all
I have been reading through this thread which is full of some amazing support & information.
I am here in search of information as I am cracking up although I am not even sure if I have a thyroid problem. Through my own research I am pretty positive I do however I was having bloods done and the GP did thyroid function & said it was fine.
I wanted to ask if that means there is no chance at all or can it sometimes not show on the standard test and perhaps there are other tests that are better.

As most of you know when you are trying to find out what is wrong with you, while you are in pain and so unwell, with some very unhelpful medical people out there, it can feel like you will never know. I am literally at the end of my tether and am back with my GP on Monday and wanted to push that more to find out if it is a thyroid problem but the question about the blood test will help me decide if it’s worth pushing.
Thanks in advance
S

Wyldwood

Equanimity, you don't tell us what way you are feeling to make you believe you have thyroid issues. GPs usually decide whether thyroid is a problem based on TSH & Free T4 blood results. You can ask for Free T3 bloods which GPs don't normally test. I suggest that you ask your GP what the numbers were for your last test. Normal TSH range is between 0.4 & 4, depending on lab, & T4 in the range 12 - 24. If your results are borderline I'd ask for further tests in a few weeks to double check.

Meanwhile have a read of this
http://thyroid.about.com/

Equanimity

Hi Wylwood


Thanks for that. I will certainly ask for my last tests to see what they actually were and maybe ask for the others.
I didn’t go into why I think I may have a thyroid problem as I am fed up annoying people about it but it may help if anyone else here has had a similar experience. I am not looking for a diagnosis when I list my symptoms – just so you can see why I am looking to go back to my GP to explore it more…

Had baby. As soon as I stopped breast feeding my lower back was in agony all of a sudden, my hands and feet started feeling like I had arthritis – like really bad. It would take me ages to get up in the morning and get my feet to straighten out.
Before that started (after baby was born) I was walking like mad doing pilates etc. Before pregnancy I was mad into running, pilates, generally kept fit and loved doing it.

I was feeling so ill and weight was piling on. Partly as I had to stop walking etc. as my joints were killing me but there was a swelling or puffiness also that I could clearly see, especially around my neck. GP was no use & I kept going back and back (paying each time of course). I was exhausted an all mu joints were aching. I was asking for bloods. Each time I got the results I would discover she only took one or two. After about 4 attempts to get thyroid one I broke down and said I really needed her help, I was having a hard time looking after my new baby, my relationship was suffering and I was struggling with work – my ability to think and concentrate was rapidly deteriorating. She said come back another time and maybe she would do the thyroid but in the mean time I should go home and loose the weight and I might feel better about myself. I never went back.


Found new GP. She was more open to helping. Got bloods. All fine apart from very low iron, there was something odd about the ferritin and I tested positive for anti nuclear but they said a low titre so nothing to worry about. She sent me to a rheumatologist. I had lots of rheumatoid arthritis tests done and was put on arthritis meds which would take 12 weeks to kick in. I was so excited I had an answer. Anyhow meds didn’t do anything so after all that time and monthly blood tests to check kidney function I was told I didn’t have arthritis. I can’t blame her, she was so nice & always said ‘I don’t know what is wrong with you but will try to find out’ which was a refreshing attitude.
She now thinks it’s possibly fybromialgia.
The lower back is in agony & I suspect is a separate issue – a disc problem. I went to a neurosurgeon to get it checked and he told me (without examining me or listening to me) the only thing wrong with me was that I needed to lose weight, so I didn’t get any futher after that lovely experience.
Overall there are so many symptoms it’s hard to remember them all but the worst are:
Fatigue – and I mean chronic. I have to work as I am the only one with work in our household but other than that I have no energy whatsoever and am falling asleep all the time.
Aching joints – hands and feet are the worst.
Cold feet – my tempt is not consistent but my partner is always telling me I am mad when Is say it’s freezing.
Zero ability to concentrate – thinking hurts, I can’t remember stuff, I just find using my brain is completely exhausting.
I am getting funny circular rashes on my fingers, just above knuckles. Not sure if they are related but they come up now and again & I don’t have any allergies.
My hair is very thin if I lift up the fringe I can see through the roots – I have v think hair and loads of it so I get away with this but it’s thinner.
Nails are non-stop breaking and tearing etc.
Skin is dry.
My thyroid area is actually sore to touch.
I feel like there are always glands up around my groin and there are lumps there an on my inner things (under the skin like the feeling of swollen glands.
Weight gain, in addition to weight I am putting on from not being able to exercise. Swelling like.
Anyway, sorry for long winded version but that’s just a brief outline of where I am.
I have done lots of reading and it seems a thyroid problem is common pot pregnancy I think a lot of the symptoms are similar.
Is it better to ask GP to refer me to an endocrinologist instead?
Thanks for your help, I really do appreciate it.
S

treecreeper

i have never really been monitered, just told to take the eltroxin, 150mcg most mornings with two mornings on 100mcg and i just swallow with my breakfast. or far later in the morning.
i have many conditions due to a birth syndrome.
i have been told about a decade ago that i had frontal lobe atrophy and recently in a car crash i was told the same but i am throwing right wobblers now of late and also very hyper.
i am worried.
my family think early dementia.
i am being sent to endo at beaumont, as i have a neurodegenerative disorder and movement disorder.
bloody hell i dont need dementia.
anyone else throw wobblers or have frontal lobe probs, heard it can go with hypothryoidism.