thyroid misery

La.de.da

It is hard to believe how little our medical professionals know about thyroid and it's issues.

My GP only tests TSH. I had to bring down a list of full panel thyroid bloods to be done..... his response was "the lab might not do those".
I'll probably have to go private myself to have them tested.

It's incredibly frustrating, I've spent a year or so a while back taking lithium which messes with thyroid function, I've not been right since.

Weight gain, thinning hair, exhaustion, dry eyes and much more. I'm awaiting bloods to come back since last week to see if anything shows different.

Currently on 50 mcg eltroxin with the last year. May aswell be taking smarties,!

Rosie1983

Does anyone know any pharmacies (preferably in Dublin but I am willing to travel) that might have Erfa thyroid in stock at the moment? I was trying to get my prescription from my usual pharmacy - Meagher's on Barrow Street - but it looks like it might have become unavailable from the supplier. I'm trying to find a pharmacy in Dublin that might have some already, as I'd prefer not to switch to Armour if possible.

davdd

Sorry if this is in the wrong place, just looking for some help interpretating results.

The last year year has been unbearable for me. I am constantly exhausted, no concentration, feeling detached, no sex drive, thinnning hair etc. the list goes on.

I also constantly need to go to the toilet to urinate.

I suspected a thyroid or a possible parathyroid problem and I just had by bloods done and got an email back from my doctor with the results and a note saying everything was normal. I'm at a loss, I have all of these symptoms and genuinely feel like they're ruining my life but apparently everything is normal? I don't understand.

Could someone please help interepret my blood results?

TSH: 2.75 (mIU/L 0.27-4.2)

T4 free: 16.7 (pmol/L 12.0-22.0)

T3: 1.60 (nmol/L 1.3-3.1)

Anti-Thyroid Peroxidase Ab: <0.16

Parathyroid hormone: 2.7 (pmol/L 1.6-6.9)

Calcium: 2.48 (mmol/L 2.20-2.60)

Ferritin: 142 (ug/L 30-400)

I don't know what to do. I constantly have pressure headaches, no concentration, no energy.

Gremlinertia

Mod note: just a reminder that advice is not allowed as per charter but discussion and experience are welcome.

TherapyBoy

Just on the off-chance, have you stopped drinking coffee recently?

The best person to interpret your results correctly would probably be an endocrinologist. It might be worth getting a referral or possibly making an appointment to see one privately if time is an issue to you in this matter more than money. Your results & symptoms could indicate various problems, major & minor, or they could indicate nothing at all. Best to let an expert take a look.

Best of luck!

qo2cj1dsne8y4k

When I was sent to hospital with profound hypo they checked me for diabetes to see if that was amplifying my symptoms.

davdd

Checked for diabetes and that came back all fine. Aunt has hypothyroidism but that's as far as it goes in my family.

In another forum, someone wrote back and said my T3 is far too low and should be in the top quarter of the reference range so around 2.3. They also said my TSH is too high and that anything above 2 can be known to cause hypo symptoms, but that seems very low to me?

I think I'm going just going to go back to my doctor and ask for a referral to an endo, maybe Dr Margaret Griffin - unless anyone knows someone better in Dublin?

qo2cj1dsne8y4k

It depends on the person. My tsh at the highest recorded was 347. I could barely stay conscious. It's mid 200s at the moment. Lowest it's been this year was about 12. I'm persistently feeling awful, for me i feel no better mid 200s than I did at 12. At the end of the day listen to your body. When I got sick I had Drs tell me it was my sinuses, a chest infection and one out of hours dr sneered as he suggested it was probably heart burn. I attended the out of hours clinic because after two anti biotics I was getting worse by the day and almost passed out that evening. He said it was probably heart burn and left me all weekend upset thinking this was all in my head. My own GP on the following Monday hasy bloods done and results were expected within a week. Following day I was called and told go straight to hospital, i was in myxodema stage and on the brink of a coma.

You'll be fobbed off and told you're fine and it's this and it's that and it's nothing and you'll be made feel like a crazy person but you know your own body, listen to it and push further until you get to the bottom of what's making you feel so awful. Could be something very simple

njs030

davdd wrote: »

Checked for diabetes and that came back all fine. Aunt has hypothyroidism but that's as far as it goes in my family.

In another forum, someone wrote back and said my T3 is far too low and should be in the top quarter of the reference range so around 2.3. They also said my TSH is too high and that anything above 2 can be known to cause hypo symptoms, but that seems very low to me?

I think I'm going just going to go back to my doctor and ask for a referral to an endo, maybe Dr Margaret Griffin - unless anyone knows someone better in Dublin?

Perhaps go and talk to your doctor directly and see what they meant by the note.
If you have symptoms then it could be an idea to start treatment EVEN IF your tsh is in the normal range because 'normal' and 'optimal for you' arent the same thing!! My personal 'optimal range'is between 0.5 -1 and I'm lucky to have a doctor that treats on symptoms and will allow me to go that low. Yours may be that low too or it could be 1-1.5 or 1.5-2 and so on - you get the gist I'm sure?? Finding *your* optimal range is the important thing and no one can tell you what that is.

If your doctor isn't willing to help you then it's time to move on and find a new doctor who is because we've enough to be dealing with without stroppy doctors who aren't willing to help.



Lexi sorry to hear you're still in the wars xx

dinky earnshaw

Hi there, Can anybody recommend a good thyroid doctor or endo. My other half has been taking eltroxin for two years now and other than an initial improvement within the first couple of months has been struggling with tiredness and other symptoms since.
GP keeps saying her bloods are fine but after a recent unrelated hospital visit the doctor there told her to go back to her GP as her bloods are "all over the place"
Mods hope this is ok please delete if not thanks.

TherapyBoy

Not sure what the rules are about recommending doctors but my endocrinologist is Professor Amar Agha in Beaumont hospital. He was a little bit stand off-ish at first but he's always been bang-on accurate with all of my diagnoses.

In 2008 I was having problems with a very rare thyroid replacement medication related condition, later discovered to be the first ever reported case in a Caucasian male, and he spotted it straight away. I think he's worth a vote!

Dustypearl

I have Hashimoto's thyroiditis. I am taking Levothyroxine 125mcg/day. I still feel chronically tired and, constant low mood, brittle hair, always freezing etc. My doctor told me that the only standard is to test for 'TSH' and says the lab wont test for the full range of thyroid markers.

I'm not too sure if its been posted before but I was wondering if anybody would have any experience with any foods that may help a flagging thyroid. Also, are there any foods that I should be staying away from? I do believe that a lot of autoimmunity can be helped if not cured by our diet. I know I have read that Gluten can be harmful but was wondering if anybody has experienced any difference whilst on this diet?

RentDayBlues

Dustypearl wrote: »

I have Hashimoto's thyroiditis. I am taking Levothyroxine 125mcg/day. I still feel chronically tired and, constant low mood, brittle hair, always freezing etc. My doctor told me that the only standard is to test for 'TSH' and says the lab wont test for the full range of thyroid markers.

I'm not too sure if its been posted before but I was wondering if anybody would have any experience with any foods that may help a flagging thyroid. Also, are there any foods that I should be staying away from? I do believe that a lot of autoimmunity can be helped if not cured by our diet. I know I have read that Gluten can be harmful but was wondering if anybody has experienced any difference whilst on this diet?

I'm on a gluten free diet, I have raised levels of antigens but no damage to my vili. One autoimmune disease seems to go hand in hand with another. But no point going gf unless you have to, to really do it requires a lot of work. I get seriously ill if I eat gluten, which is sort of good as it makes me incredibly careful on what I eat.

If you're doing it just to try to help your thyroid then you won't really be fully gf. Maybe look at getting tested for coeliac

I only get my TSH and T4 levels checked but I have an amazing gp who is happy to listen to how I am feeling in conjunction with my test results; this means that I keep my TSH below 1 as that's where I feel best but technically that's too low!

tanit

Dustypearl wrote: »

I have Hashimoto's thyroiditis. I am taking Levothyroxine 125mcg/day. I still feel chronically tired and, constant low mood, brittle hair, always freezing etc. My doctor told me that the only standard is to test for 'TSH' and says the lab wont test for the full range of thyroid markers.

I'm not too sure if its been posted before but I was wondering if anybody would have any experience with any foods that may help a flagging thyroid. Also, are there any foods that I should be staying away from? I do believe that a lot of autoimmunity can be helped if not cured by our diet. I know I have read that Gluten can be harmful but was wondering if anybody has experienced any difference whilst on this diet?

If you are coeliac or have a gluten intolerance of course it will help to go on a gluten free diet. But it's not going to make a difference if you are not. You might have an intolerance to some foods and avoiding them will help as your immune system will not overreact. Tomatoes, dairy are also known to cause problems but avoiding them without effectively knowing they are causing problems will not help you and in the case of dairy if you don't have a lactose or milk allergy you might end up having nutrition issues. You can try keeping a food diary and checking if certain foods make you feel sluggish after eating it them with that you can actually go to the doctor and see if you can get tested for allergies to them.

But unfortunately a gluten free diet per se will not help you if you are not coeliac. And the problem is that if you have a thyroid disease you have an organ failing and diet along is not going to cure anything. Try eating healthy with lots of veggies, non-processed foods, fruits and the like will help the basic diet doctors recommend it will be helpful.

The problem is that there is not enough research on the issue and most GPs are not exactly very helpful when you have thyroid disease. It's not a "sexy"
or awful disease and they completely disregard you when you talk about how bad you feel

Sorry about not being very helpful

qo2cj1dsne8y4k

You can actually give yourself an intolerance. I came off all gluten last year thinking it would help, and it didn't but when I went back on gluten I was awful unwell initially

Dustypearl

Thanks everyone, I probably should have said that I have been tested for coeliac disease and it came back negative. The doctor says I possibly have gluten intolerance but its hard to stay on track when its not definitive. I was just wondering if eating gluten thyroid did damage you thyroid in general it might help me stay more on track.

tanit

Dustypearl wrote: »

Thanks everyone, I probably should have said that I have been tested for coeliac disease and it came back negative. The doctor says I possibly have gluten intolerance but its hard to stay on track when its not definitive. I was just wondering if eating gluten thyroid did damage you thyroid in general it might help me stay more on track.

With modern diets people eat a lot of carbohydrates and processed foods, etc. What it happens sometimes is that you end up with a bacterial overgrowth in your gut and the only way of stopping symptoms that are very similar to thyroid ones is to stop eat carbohydrates in general for several weeks going into months to help things going back to normal. It's not a gluten free diet because you need to stop eating grain and processed food for at least a couple of months but it helps a lot people with symptoms that are very similar to thyroid ones regardless of whether you have thyroid disease or not. If you have thyroid issues this kind of problem will make you feel like crap

I think in your case a food diary and going for the healthy diet with lots of veggies, fruits, fish and the like will help you find what works best for you if you don't really seem to have an obvious coeliac problem.

Myfitnesspal is a very good app, it's free, it has a terrific database and it will help you a lot with the whole food diary. It helped me to find out about my issues with insoluble fiber and my stomach feels much better when I'm good and avoid the problematic foods.

I hope it helps

qo2cj1dsne8y4k

Not looking for med advice but need advice on how to find medical help that helps

My thyroid has been seriously troublesome since April 2016, coming to a head in may 2016, being severely unwell and ended up being told I had profound hypo (hashimotos) - I've been on eltroxin (1400 mcg weekly). My levels have fluctuated wildly, with my last tsh reading being 290 (tsh) and t4 being below the lowest they measure. My consultant in Dublin told me in may that it's the worst case she's ever seen and she seemed to be at a loss with me. I had bloods done that day to be tested in 3 labs. I've heard nothing since. My GP is reluctant to move forward with any recommendations until they hear back from hospital.

The past two weeks I've been very unwell. I'm catching everything. Cellulitis, ear infection, sinus trouble. I can't fight off anything. I'm bloated up like the Michelin man, my hands and feet are insanely swollen, I can't eat, I'm so tired. Getting up out of bed is a huge effort. In the past week I feel like I'm on gear, I have that horrible blank feeling constantly. I talk to people, just a sentence and I'm losing my train of thought mid sentence. It's noticeable. Friends are asking if I'm drunk. Thursday night I fainted but Drs are saying go back to GP for urgent referral to endocrinology. My heart feels funny. Last night there was 3 moving lines on everything I looked at. I woke up this morning to discover i puked all over myself in my sleep. I'm not unwell as in I can't pin point anything specific (example a chest infection) but I'm so unwell. Even moving my limbs feel like it's the biggest effort in the world. Because I'm constantly unwell with different things I'm paranoid my GP is going to think I'm suffering with my nerves (I'm not) but honestly I feel so bad and I think unless you've had this you can't understand how awful it is. Last year my tsh was 347, but I feel so much worse today. Every day I feel worse and nobody can help me. I need to find someone who'll help and make me feel better. I'm pure freaked vomiting in my sleep but I can barely keep my eyes open

The_Conductor

Lexie- you need to be constantly onto your GP ensuring they are chasing the consultant and the hospitals for test results- and come up with an appropriate treatment regime for you. The manner in which you've been left dangling- is not satisfactory- in fact its dangerous. Keep on at your GP- and at very least- get them to treat the symptoms you're experiencing- it is not appropriate to set you free with no treatment regimen.

qo2cj1dsne8y4k

I am continuing on with my 200mcg a day but it's not helping me

The_Conductor

LexieOnRale wrote: »

I am continuing on with my 200mcg a day but it's not helping me

But you have no idea of what an appropriate dose is- given how your condition is not under control- you *need* to chase the GP on this. Simply continuing on 200Mcg- while its the only thing you can do in the absence of further instruction- is not sufficient- very obviously........

New Home

If I were you, I'd get a new GP and I'd demand to be referred to an endocrinologist, and I'd head straight to the A&E - your symptoms may be overlooked as something insignificant when taken individually, but all together they obviously show that something isn't right. And unless you had drunk three bottles of vodka, I wouldn't call it 'normal' that you should vomit in your sleep without you realising - you could have choked!!

njs030

I agree that you should go to A&E. You might have a secondary condition that's being overlooked, at the very least your Meds need to be adjusted.
Vomiting in your sleep can cause you to choke and die. Its not something to ignore.

Is there anyone that could advocate for you? This is going on so long now perhaps someone could do the talking for you and be a bit more pushy if you're feeling you can't do that.

tanit

I agree wholeheartedly with everyone telling you to go to the A&E. Go there tell them what's going on that you are waiting for a referral to an endocrinologist and how bad everything is going on in the meantime. They can't withhold treatment they have to act.

Pick up a taxi and a friend or relative and go there. You need to be seen by a doctor vomiting on you sleep is not normal

La.de.da

Maybe you might need to change GP lexi.
There are other meds bar eltroxin that may suit more.
Absolutely go to A&E, you sound like you are going through the mill, no one should suffer like that.

I empathize with you. It's a tiredness,a heaviness and lethargy nobody understands unless they've been through it.

heather2

Hi. Do you know what is the name of the thyroid support group that you mentioned your post. Sorry only saw these post on boards.ie now

heather2

Hi. Just saw your post and I had more or less same experiences. I am interactive for 20 years. U get so used to changing moods etc that you don't know if this is normal or menopause symptoms. It is app frustrating. There are so many people talking on these forums and It is so sad that we all have symptoms that no one can explain what/why. We put up and shut up and only someone that has hasmitotos/underactive will understand this silent horrible thing that has to become everyday living for us. I am so tempted to check out an endocroligist myself but keep putting it off. To answer your question I too changed from morning eltroxin to night time hoping to see change....but worse it made me. I like to snack late so felt it should be taken on empty stomach. I take 75mgs Mon wed and Friday and 100 gms other days. My levels kept fluctuating going from too much to too little so had to come up with this plan myself. I worry about hormonal levels all over the place but don't know how to balance them.
Hope my experience is some help to yourself. Go back to morning meds.

davdd

I posted about a month ago about dealing with hypo symptoms but getting nowhere with doctors. Since then I was able to find help and a really good doctor who doesn't cost a lot so I thought an update my help someone in the same situation as me.

Basically, I have had really bad hypo symptoms for the past year or so and I suspected an underactive thyroid but I went to three separate GPs (two in Ireland and one in the Netherlands) who told me that my TSH (ranging from 2.75 to 4.4 [I know these are low compared to a lot of people but I'm still symptomatic, weight gain, hair loss, brain fog, fatigue etc.) was within a "normal" range and refused to refer me to an endocrinologist or to offer any treatment.

At this stage I was down about €300 just from GP visits and blood tests and I was still intent on getting around the referral system to see an endo (which would have been another 200+) but then I came across some blog posts about thyroid disorders written by a GP in Maynooth and made an appointment asap. I'm not sure what the rules are about recommending doctors but I think others have posted about him before. His name is Dr Neville Wilson and he works out of the Leinster Clinic in Maynooth.

I took my latest blood test with me with a TSH of 3.92 (to save on the time and money of waiting for more test results) and he took one look at it and said that in his opinion anything above 3.0 is abnormal and, coupled with the symptoms I described, that in his opinion I was definitely hypo. He prescribed Nature-Throid then and there and told me to come back in three months for bloods and that I should call in about six weeks to let him know how I was getting on. He said idealy he'd like my TSH to be around 2.0 or as low as it take for me to not have any symtoms (because everyone is different).

I'm a month on meds now and I feel so much better already, I think I need to up my dose a little but for the most part my energy is back and my fuzzy head is gone. The total cost of my appointment was 65 euro and then 18 per month for meds - if I had went here first I would have saved a lot of heartache and money. From what I can gather, he offered the exact same service as all the good endos/GPs I've read about in Dublin (Griffin, McGovern, Smith) at a fraction of the cost and he was willing to prescribe natural desiccated thyroid as his treatement of choice.

Obviously do your own research and find a doctor who works with you, but I have to say Dr Wilson was so easy to talk to and he treats symptoms not just tests results. He even said that thyroid disorders are so misunderstood here because Irish doctors are fixated with TSH. Not knocking other doctors/GPs who have workd for other people, but if you're like I was - banging your head against a wall and feeling like you're getting nowhere - then I think it could be worth checking him out. Very straight forward from start to finish and I finally feel like I'm getting my life back.

http://www.leinsterclinic.ie/contact-us/
http://drnevillewilson.com/2016/04/08/hypothyroidism-detection-diagnosis-treatment/

jenizzle

I too have been to Dr Wilson after a soul destroying few trips to my usual GP who would rather prescribe me Lexepro for anxiety instead of NDT which was working.

I have dipped a little over the last month or so, though. After sleeping 10-12 hours each night over the weekend I finally feel like I'm not shattered but my mood is changeable and my brain is very foggy. Still get dizzy easily and my temperature is all over the shop too! I'm still nowhere near as anxious as I was on Eltroxin though.

I'm back with Dr Wilson this week and hoping I'll be on my way to recovery. I found GP's will just throw Eltroxin at the problem instead of listening and investigating fully, and it can be very frustrating. I would also recommend getting proper blood tests done e.g. Ferretin (Iron), magnesium, calcium, B12 and Vitamin D etc as all these work together to keep you healthy and if one is out of sync, then it could affect others. Just be aware of timing as, for example, iron supplements stop NDT absorption.

Some FB pages I found really useful which were posted here but may be buried further in the thread:
https://www.facebook.com/groups/1543351072559397
https://www.facebook.com/groups/FTPOUKandEurope/

heather2

Hi ... Thanks so much for this information.
I think I will look up Dr Wilson and possibly arrange to see him. I would thoroughly agree with Jemizzle about those blood tests.
I also have high cholosterol which i read can be related to underactive thyorid even though my diet is fairly healthy.
Great to see such help on these forums. I am new to it and find it so interesting.