A year ago my TSH was raised slightly and my T4 was normal.
My Dr decided to start me on 50mcg of Levothyroxine.
In Sept she increased it to 75mcg when my TSH as 3.
Then in Dec she increased it to 100mcg when my TSH had increased slightly to 3.9
In Feb '19 I requested the TPO antibody test which came back positive at 171.
In March I started getting high resting heart rate, had TSH and T4 retested and was overmedicated.
The Dr decided to stop my meds for 6- 8 weeks and see how I got on.
Now in April '19 my latest TSH is 16.10 and my T4 is apparantly in the normal range!
I've asked to see a specialist, since I have Hashimoto's but seem to be ignored by the Dr and basically told there's nothing else they can do other than prescribe T4.
I just feel alone and not happy to just get on with it.
I have done research and generally found alot of info but struggle to find a specialist who is willing to listen and go above and beyond outside of conventional protocol.
Has anyone been through the same thing and have any suggestions/recommendations for specialists please? I don't mind going private if I have to.
FYI - I'm 38 and a mother of two.
Written by
Smilesy
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I do sympathise. You'll probably find the experience of the administrators on this forum more helpful than a specialist as most Endocrinologists are specialists in diabetes and not thyroid conditions.
What was your TSH and FT4 when you were diagnosed and prescribed levothyroxine?
Have you had other basic blood tests such as vitamin D, B12, folate and ferritin or an iron panel done?
Dose of Levothyroxine should only ever be increased or reduced by 25mcg MAXIMUM
with Hashimoto's low vitamin levels are extremely common
Essential to test vitamin D, folate, ferritin and B12
See GP for vitamin testing and also coeliac blood test
Hashimoto's affects the gut and leads to low stomach acid and then low vitamin levels
Low vitamin levels affect Thyroid hormone working
Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten. Dairy is second most common.
According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps, sometimes significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)
Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies
Ideally ask GP for coeliac blood test first or buy test online for under £20, just to rule it out first
Assuming test is negative you can immediately go on strictly gluten free diet
(If test is positive you will need to remain on high gluten diet until endoscopy, maximum 6 weeks wait officially)
Trying gluten free diet for 3-6 months. If no noticeable improvement then reintroduce gluten and see if symptoms get worse
It is wrong of your doctor to suddenly stop thyroid meds. You sound as if you have subclinical hypothyroidism with the varying results typical of Hashimotos.
There is thought that reducing thyroid antibodies may lesson Hashimoto attacks and the proliferation of white blood cells & resulting inflammation. You may find "The Root Cause" by Isabella Wentz an interesting read.
Hi Smilesy, my parents and grandparents were all diagnosed with hypothyroid conditions. Aged 48, I have been showing clinical signs for the last 5 years including weight gain of over 20kg. I have received no treatment because my results for TSH, T4 and T3 are consistently in the low normal range. I am now dealing with severe vitamin D deficiency, have severe joint pains with some immobility, feel like 80 years old, and already have nerve damage. Last month I was told by my GP I need Carpal Tunnel surgery. Enough was enough, no surgery without a systemic diagnosis. I paid £20 and called the online PUSH DOCTOR service to speak to another GP. They actually listened, checked my symptoms, and copies of my tests, and referred me to a private endocrinologist - of my choosing - at my request. At last my GP is actually doing something about it, because the consultant is telling him what is needed. Yes, it cost me to see a private consultant, but he can always refer me back to the NHS for treatment. I also chose my consultant through reviews of his work on Hashimotos and Pituitary issues, not just diabetes. All these reviews are available online. My GP is still slow, but I feel things are going in the right direction. Perhaps you should try it. Can't fault PUSHDOCTOR. They sent me a referral letter by email immediately after my consultation. That's all you need to see a consultant.
Carpel tunnel should improve rapidly once on Levothyroxine
Bloods should be retested 6-8 weeks after each dose increase in Levothyroxine
Aim of Levothyroxine is to increase dose slowly in 25mcg steps upwards until TSH is under 2 (many need TSH under one) and FT4 is in top third of range and FT3 at least half way in range
All four vitamins need to be optimal, that frequently means self supplementing to improve
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also extremely important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common, especially if Thyroid antibodies are raised
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. Last Levothyroxine dose should be 24 hours prior to test, (taking delayed dose immediately after blood draw). This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)
Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or all vitamins
Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random
"The Dr decided to stop my meds for 6- 8 weeks and see how I got on."
It doesn't seem like anyone's experience has been a straight forward one.
In a way it's good to know my experience isn't a rare one, but one which seems to affect people globally.
I have the best support at home and have carried out a lot of research into Hashimoto's mostly through Izabella Wentz's website, videos and book.
Before knowing I had a thyroid issue, I was always obsessed with eating healthily and exercise, so cutting out certain triggers like Gluten and sugary crap 'treats' hasn't been that hard of an adjustment to make.
I was feeling my best in Dec/Jan when I'd been on the 100mcg from mid December. Then I started getting symptoms towards the end of Feb - high resting heart rate, palpitations, anxiety, restless etc. so I requested a blood test. My TSH was below 0.11 any my T4 37.6, so that's when the Dr advised that I stop it for 6-8 weeks.
I am always cautious regarding the ingredients in meds so I did research on levothyroxine. The meds I was originally on were fine but then I was changed to Tevo brand (the 100mcg ones), which I know includes the controversial Mannitol. So now I know more, I'm not sure if it's the brand or the dose that caused the shitty side effects.
I did get my vitamin levels checked and were normal. My Ferritin levels were 47 which the Dr seemed to think were on the low side by not low enough to start taking Iron supplements.
I have another test tomorrow, and this time the Dr is going to insist that the lab do the T3. She actually told me yesterday that it was the lab who didn't carry it out and she had after all added it to the list of blood tests.
She's pretty good in that regard, but obviously her hands are tied with everything else and so here I am looking for a specialist and some advice.
I am also thinking of seeing a Functional Medical Practitioner - has anyone seen one in the UK. We're located in the North East.
Also after reading through Hashimoto's Protocol book, one of the things mentioned is 'silver' fillings. I have two. Has anyone had issues with these/had them removed and seen a difference. I hate dentists so would rather not go through the procedure of having them replaced with less toxic ones if I really don't have to.
Soz for the long reply and thanks again for everyone's quick replies.
Agree with all of the above. You have an ignorant doctor, run don't walk to another one - take your blood tests results with you. High TSH and High Antibodies screams Hashimotos and a (so called) doctor should have seen that immediately.
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