Underactive thyroid 30 years - I do not tolerate thyroxine. Please, how do I find a reasonably local endo that understands this problem?

[trickydog]

My health is deteriorating and the my gp [practice] does not prescribe anything but t4. Been to the main local hospital when asked for endo referral and have just seen registrars - they dont treat with anything but t4. I have fibromyalgia, extreme exhaustion plus numerous other problems. I have read Dr P's book and would travel the distance to see him - but how do I find a doctor that will listen and try t3 or NDT?

[Moggie]

Firstly I would look under the "hospital" section at the top of this page to see if any hosp near you have favoured well with other sufferers. If a certain person does give a good review but doesn't mention the endo by name the click on his/her name in blue and send him/her a PM asking the specific name of the endo.

If you get no joy there I would then ask another question on here, something along the lines of "Does anyone know of a good endo in so and so area" but you will have to ask people to PM you with replies as this site does not like endo's (good or bad) actually being named.

Lastly if the first two don't work it will be down to you googling something like "Endocrinologist in so and so (whichever area you live) and see what comes up and then it will be all down to research I'm afraid.

Hope this helps.

Moggie x

[fion in reply to Moggie]

What happens when you can't tolerate t4?

[Moggie in reply to fion]

Your GP should then send you to an endo for further investigations and alternative medication.

In what way can you not tolerate T4?

Moggie x

[shaws Administrator]

Welcome to our forum

If you email [e-mail] she has a list of sympathetic NHS Endos and private doctors.

Someone may private message you with a name. Maybe give the area in which you live.

Dr P cannot prescribe.

Two links re fibro:--

web.archive.org/web/2010122...

web.archive.org/web/2011041...

We can improve our health immensley but it can sometimes be slow as what suits one person doesn't suit another. So it is trial and error. At least it is great to try an alternative although it may cost.

[fion]

I mean What are the symptoms of not being able to take thyroxine x

[trickydog]

To answer your question re symptoms of not being able to take thyroxine.

First prescribed 1986 [75mc]. Ok for about a week - more energy -not so tired. Then adverse reactions increased... for me these were:

very depressed,withdrawn - want to hide away. Very nervous and anxious. Very irritable and on edge. Angry. Feeling very hot [despite low temperature]. Twitching eyelids and feeling of pressure in throat. I was worse on the med than off! Tried a number of times to take med - same reaction.

I did not take thyroxine for a number of years and about 12 years ago tried again - same reactions. I have since taken 25mcg a day and all attempts to raise even to just 50mcgs bring on old symptoms. I have a TSH of around 7 most of the time plus high antibodies, and have been told by hospital endo should be on around 100mcg daily and should build up slowly ie by say 25mcg a week because my body is obviously sensitive to t4.

This still brings on above symptoms after a couple of weeks.

Like many other people it seems, I am between the devil and the deep blue sea.... none of these health professionals believe there is any other treatment for thyroid failure

None believe in anything but t4 - I have been catagorically told - there is no other treatment.

It would be wonderful to consult with a knowledgeable doctor who may be able to help and offer an alternative option] [after a lifetime of poor health].

S

[Zabby in reply to trickydog]

I had so much trouble when I first started taking thyroxine. I couldn't even take a 25 mcg tablet, I would just cut it into chunks and try to take a bit at a time. Taking a bit helped with the hypo symptoms but taking more made me feel dreadful. My GP wasn't much help and the endocrinologist claimed he'd never heard anything like it before! Eventually this resolved and I managed to get up to 75 mcg and felt well for years. Recently my TSH went down and T4 went up and I found I had a buildup of reverse T3, so I came off meds to let it settle down but now I'm having tremendous problems getting back on them! I tried T3 but I'd get adrenaline symptoms when I tried to take more because the T3 tablets are 20 mcg and it's hard to cut them into small amounts in order to increase the dose gently. My private doctor says he thinks that when I increase my dose it triggers my adrenal glands to produce adrenaline for some reason, and I'm now trying increasing by small amounts very slowly (1/8 tablet of Erfa every 5 days). It seems to be going well so far, but it's still early days. Basically, what I'm saying is that it's possible you have the same problem as me and in that case it may be just as hard to take T3 or natural desiccated thyroid as thyroxine, but it is possible if you just take it slowly and give your body time to adjust to each increase. There are also other conditions that can hinder progress in increasing your thyroid dose and stopthethyroidmadness.com explains that very well. Good luck.

[stephensmith in reply to Zabby]

I have very similar problems to you, Instruggled to get to 75 but hypo symptoms kick in, even to the point of the room spinning. I have tried T3 and NDT but unable to tolerate any increase. I was on 75 for 6 months then tried to increase by taking 100 on one day of the week and 75 for other 6 days. Only lasted 4 weeks. Within 5 days of no thyroxine the aches and pains were very painful. Back to 50\75. I believe that if I could tolerate more I would be better. TSH is 6.

[Triciatextiles]

You need to go back to your GP and ask for a second opinion. Tell him that you want to be reffered to an endo of your choice who specialises in thyroid function, under the NHS choose and book system . I would suggest that you reseach and endo here is the link to a website where you can do this. When you have choosen who you want to see take the details to your GP.

drfosterhealth.co.uk/

Are you based in Suffolk? I am and in my experience there is not an Endo in suffolk that i would want any of my family to see. I got my husbands GP to refer him to see endo in Essex (Colchester General hospital) who prescribed him T3. This has changed his health and his life. It is not true that T4 is the only medication, some people need T3.

Best of luck