Thyroid not being treated correctly.

StormWarrior

I've been taking thyroxine for 8 years and have felt unwell the entire time. I'm always brain foggy, tired. Sometimes the dose gets too high and I end up with palpitations, trmors and heat intolerance. Sometimes it's too low and I'm freezing all the time. I've seen several GPs and I don't think they know what they're doing. I don't think they even understand the test results. Every time they just say, "Increase the dose a little," but then it gets too high so they say "drop the dose a little." Then it gets too low. I've seen the endocrinologist repeatedly but he's bloody useless as well. He tried me on T3 which seemed to help temporarily but then it went back to normal. My question is: for all these years I have not been getting good medical treatment. Quite frankly none of the doctors care at all or have any idea what they are doing. What can I do about this?

Splendour

Hey Stormwarrior, am in the same boat myself and have been for the past six years. I've lost faith in my GP and the one time I saw an Endo, he basically said 'bloods are fine so there's nothing wrong', followed by 'you have a slightly raised goiter and could be prone to thyroid problems.'
So I'm presenting with typical hypothyroidism symptoms ie. tired, brainfog,flu like feeling, weakness, headaches etc... and a slighty raised goiter and he ignores all of this and goes by bloods!
I'm self medicating on Armour but tbh, I really want to get a good endo who will treat by symptoms and not bloods. Thinking of getting an appointment with an Endo that a fellow boardsie went to see and I'll keep ya posted.
Chances are the T3 was helping but too low a dose for you to get completely well...

RentDayBlues

Ditto on all of the above - I became so frustrated with docs in Ireland, I was in tears every time I went to see them as I always felt it was going to be a battle to get help.

I'm still so tired and am now testing for adrenal fatigue. I have seen one endocrinologist who said "live with it and oh, would you like some anti'd's"

I have finally found a doctor who is helping

He has listened to me and all my wows and rather than just dismissing them he has spoken to a new endocrinologist on my behalf and they are trying to alter my Eltroxin dose to bring my TSH down, I feel better once is really low. He was willing to look at all options and is the first doctor I've met who didn't try to fob me off. I don't feel any better with the increased dose at the moment but I know that he will look at other options not just expect me to "live with it"

I wish it was easier to sort it out - and I would love to feel "awake" again. I imagine what it would be like to wake in the morning and not want to cry because it feels like I've just gone to bed and had no sleep. :rolleyes:

merri1

HI Eeryone
just back from a disappointing appointment with Endo.

I was diagnosed with hypothyroidism 3 years ago although I suspect Ihad it for years before that. decided lately that I want to cure it

I have found that thru diet I can improve my symptoms alot I have been on a yeast / alcohol / sugar / yeast free diet to treeat candida for last 2 months and it has really helped with the thyroid symptoms also.

i believe kelp is a very good thyroixin supplement - I am going to lower my dose of eltroxin from 150 / 100mgs every other day to 75mg every day as directed by endo and take 1 kelp capsule everyday - i wil let ye know hoe i get on....
Also I was told by a healer that if you massage the thyroid it will 'wake it up' and hopefully kick start it I am doing that too - just rub it up and down 3-4 times a day
Any other suggestions?

glitterbug86

Merri1 I'm sorry but your plans do not sound at all right to me.

merri1 wrote: »

HI Eeryone
just back from a disappointing appointment with Endo.
I was diagnosed with hypothyroidism 3 years ago although I suspect Ihad it for years before that. decided lately that I want to cure it

First off there is no "cure" for hypothyroidism. The most common cause of hypothyroidism is Hashimotos Thyroiditis. This is where your immune system attacks your thyroid gland, destroying the cells, and rendering it unable to produce sufficient thyroid hormone... the result of this is hypothyroidism. It can be checked by having a blood test for the two antibodies which attack the thyroid gland during this autoimmune process (Anti TPO AB's and TgAb's)
http://www.mayoclinic.com/health/hypothyroidism/DS00353/DSECTION=causes

merri1 wrote: »

I have found that thru diet I can improve my symptoms alot I have been on a yeast / alcohol / sugar / yeast free diet to treeat candida for last 2 months and it has really helped with the thyroid symptoms also.

Well done on this. Glad you find it's helping.

merri1 wrote: »

i believe kelp is a very good thyroixin supplement - I am going to lower my dose of eltroxin from 150 / 100mgs every other day to 75mg every day as directed by endo and take 1 kelp capsule everyday - i wil let ye know how i get on....

Iodine deficiency is also a cause of hypothyroidism but it happens in areas of the world where there is iodine deficiency in the diet. "Examples of these areas include Zaire, Ecuador, India, and Chile. Severe iodine deficiency is also seen in remote mountain areas such as the Andes and the Himalayas. Since the addition of iodine to table salt and to bread, iodine deficiency is rarely seen in the United States" ....(or Ireland!)
http://www.medicinenet.com/hypothyroidism/page2.htm

Kelp is high in iodine and is sometimes said to be a good supplement for the thyroid. This is only true if the hypothyroidism is actually caused by iodine deficiency. Otherwise there is apparently no benefit to eating it regarding the thyroid. It seems very strange to me that your endo is lowering your dose by that much and adding 1 capsule of kelp???

merri1 wrote: »

Also I was told by a healer that if you massage the thyroid it will 'wake it up' and hopefully kick start it I am doing that too - just rub it up and down 3-4 times a day

This is just find strange! If your hypothyroidism is caused by hashimotos as explained earlier then the damage is irreversible. No amount of rubbing will "wake it up"!

merri1 wrote: »

Any other suggestions?

My only suggestion is to read up about it more!! There is A LOT of info online if you care to read it. And also enquire with the endo if you have been tested for the antibodies ie. if he has confirmed the cause of your hypothyroidism.

Hope this helps

hugsandkisses

I have epilepsy since i was a baby .

wandatowell

StormWarrior wrote: »

I've been taking thyroxine for 8 years and have felt unwell the entire time. I'm always brain foggy, tired. Sometimes the dose gets too high and I end up with palpitations, trmors and heat intolerance. Sometimes it's too low and I'm freezing all the time. I've seen several GPs and I don't think they know what they're doing. I don't think they even understand the test results. Every time they just say, "Increase the dose a little," but then it gets too high so they say "drop the dose a little." Then it gets too low. I've seen the endocrinologist repeatedly but he's bloody useless as well. He tried me on T3 which seemed to help temporarily but then it went back to normal. My question is: for all these years I have not been getting good medical treatment. Quite frankly none of the doctors care at all or have any idea what they are doing. What can I do about this?

I was suffering from an overactive for 2 years and I had it removed in 2008.
Now I am very much underactive and the meds dont help one bit.

I can across this great article a few weeks back and I recommend all people with thyroid issues to read it


http://www.independent.ie/health/case-studies/real-life-thyroid-tyranny-2143056.html

merri1

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glitterbug86

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wandatowell

merri1 wrote: »

do any G.P.s in Ireland actually want to help cure people - more evidence to the contrary!!!

I think the issues may be that doctors are told how to treat people with an underactive thyroid and that method is incorrect or to rephrase "the method doesnt have the same effects on everybody".
What works for one person does not work with everyone. I know this to be true.

I am going to bring the article I linked to in an above post to my GP and if I'll report back here what his impression is.

In my work place there are two doctors who believe the only method to treat a person with hypothyroidism is to stuff them full of eltroxin. It this blinkered view on treatment that makes life hard for many people and it shouldn't be.

dollydishmop

My GP doesn't treat my thyroid at all! She referred me straight on to an excellent Endo, and he & I work together very well.
My GP just draws my blood monthly and writes the prescriptions according to the dose my Endo has set.

@Stormwarrior - you don't mention an Endo, if you're not seeing one address this ASAP with your GP.

@RentDayBlues - if your GP is discussing your case already with an Endo they trust, ask them why they don't just refer you on to the Endo, so he/she can treat you directly.

And my advice to others out there, grumbling about their GPs/Endos....this is *your* life and *your* health. If you're not happy with your Endo, ask your GP for a different referral, and if you're not happy with your GP, dump them!

Oh, and be sure to know your subject inside out, so any future GP or Endo knows that you won't be fobbed off with inferior treatment.

I have (had?) Grave's/Hyper, and have just had a TT, so I guess I've just joined the happy HypO family <grin>, and have absolute faith my medical team, we have always *discussed* my options and they have listened to me just as much as I listen to them...now I know that's rare, but its only because I have constantly pushed for the care I want, and a mutually aggreeable care package is what I've worked hard to acheive...I wouldn't have it any other way.

tbh

merri1 wrote: »

HI Eeryone
just back from a disappointing appointment with Endo.

I was diagnosed with hypothyroidism 3 years ago although I suspect Ihad it for years before that. decided lately that I want to cure it

I have found that thru diet I can improve my symptoms alot I have been on a yeast / alcohol / sugar / yeast free diet to treeat candida for last 2 months and it has really helped with the thyroid symptoms also.

i believe kelp is a very good thyroixin supplement - I am going to lower my dose of eltroxin from 150 / 100mgs every other day to 75mg every day as directed by endo and take 1 kelp capsule everyday - i wil let ye know hoe i get on....
Also I was told by a healer that if you massage the thyroid it will 'wake it up' and hopefully kick start it I am doing that too - just rub it up and down 3-4 times a day
Any other suggestions?

Folks - a reminder. This is a scientific forum and we don't tolerate statements like "there is a cure for every disease" here. I'm not rubbishing your views, merri, but you can't make statements like that in this forum. Please don't do it again.

Please do not comment on this on-thread - you can send me or any of the mods a PM if you like, but the policy won't be changing.

RentDayBlues

dollydishmop - in reply, I have had very bad experiences with endo's in Ireland and would prefer to deal with a trusted doctor who is being helpful rather than an endo who only wants his big fee and to through anti-d's at me.

I'm glad your endo is good and seems to be helping you out. Another factor is the cost - I know the money I have spend on endo's in the past would have been better spent on this doc if I had found him sooner!

*Raverbaby*

I'm not sure if this is allowed but can anyone recommend me a good specialist in Ireland??

cltt97

If you like I can pm you the details of the endocrinologist I go to. But what I would recommend, and that goes for any endo, is that you get as many tests done as possible before you go, otherwise it will take ages and cost a lot of money. The standard treatment here is, if you're hypo, there's your Eltroxin. If that doesn't work for you, you need to turn up with evidence and know your stuff and argue your case - and even then you need to be lucky to find an Endo who is prepared to work with you, rather than put you in the "hypochondriac/luni" bin!

Redpunto

Get yourself referred to a specialist - a GP doesnt have the knowledge to treat it adequately, as soon as I was diagnosed i was immediately referred to one

*Raverbaby*

well i had my full thyroid removed at 18 because i was hyper, and i just haven't felt myself ever since - i've been to see an endo but it was mostly before the op and maybe 2-3 times afterwards, which was before i started to feel the way i do now ( possibly because it takes months for your body to adjust).

My GP only tests for tsh and t4 don't think he has ever checked my t3 levels. I know in my own heart something is wrong and has been the past four years its only now im finished in college ive decided enough is enough.


I found one doctor which was on the thyroid-info website, has anyone any experience of him? Patrick macgovern is his name think his practice is in goatstown.

dollydishmop

RentDayBlues wrote: »

dollydishmop - in reply, I have had very bad experiences with endo's in Ireland and would prefer to deal with a trusted doctor who is being helpful rather than an endo who only wants his big fee and to through anti-d's at me.
I'm glad your endo is good and seems to be helping you out. Another factor is the cost - I know the money I have spend on endo's in the past would have been better spent on this doc if I had found him sooner!

[/quote]

You already said you're doctor is conferring with an Endo, and you sound pleased with what this Endo has so far suggested.
All I recommended is that you ask your doctor to refer you to the Endo, so you can work direct with him or her...which I think would be a better course of action.
Go public - if your GP refers you, you don't pay to see the consultant...

RentDayBlues

Why would a pay to see this endo when my doctor is speaking to her on my behalf?

The doctor I have knows more about the condition than most and his treatment is excellent.

Any endo I have met is a pompos over-paid individual who has no time for patients. They do not know everything and to be honest most are completely against any treatment that is seen as slight alternative.

cltt97

The problem with going public is that you're not likely to see the endo but rather one of his registrars. I went down that route once, and after an hour of "battle of the wills" and fighting against "text-book" treatment, the registrar finally gave up and got the consultant to help. However, in that particular case the consultant was a bit of the variety that RentDayBlues described. So eventually I switched to a new endo and I see him privately. He is excellent.
Re Dr Magovern - I have not consulted him myself, but some other boardies here have - from what I remember they said - he does a lot of testing (including free T3 and adrenal saliva tests) and is prepared to use some alternative treatment methods (i.e. armour), but he is very cautious in his approach an he is a big fan of using supplements, this did no suit some of the people that consulted him. He is also quite expensive.

thirtythirty

Could any of you just try and quickly put your "heat intolerence" in persepective or real world situations?

I seem to be hot all time. In particular my face and head - i sweat way before anyone else either in a hot room, or in direct sunlight. A 15 minute walk in the morning, unless there's a notably cold presence of air on my face, will cause me to start sweating (it'l be gone 5 or 10 minutes after sitting down at my desk though). And no, I'm not unfit before anyone asks!

I was doing a bit of Googling on it, but self diagnosis is bollix - my diagnosis path eventually led me from thyroids to coronory disease!

Anyway i'd just be interested in what people with this actually mean in terms of heat intolerence. For instance sometimes i can bear the heat of a room. But i've nothing to guage against!

Cheers