Hello all. I'm writing on behalf of my wife who's totally drained at the moment. She already has M.E but has had a lot of other problems, including depression, and has now had a Thyroid Peroxidase antibody test come back at 168.3. Most of the females in her family have Thyroid problems and shes been telling her doctors for years that she does too (all the symptoms have been there - sweating, mood, lack of appetite etc) but her doctors have always said that this test and that test says no so she's ok. Two days ago a TPA test came back and after years, she was proved right.
Now, shes very scared as she doesnt really know what comes next. She's down for a TFT blood test and has been prescribed levothyroxine 25mg once a day. Shes basically looking for any advice, any information that will help her deal with the road ahead, any do's and don'ts and (I think) anything positive to give her some hope. If you can help in any way, we'd be very grateful.
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Magical99
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Hi Magical99, I’m sure one of the Admins will be along shortly with advice and reassurance. I’m one of the many on here helped by this wonderful forum and you’re in the right place. Good luck!
If your wife is under 50years old then the standard starter dose is 50mcgs Levothyroxine
Bloods should be retested 6-8 weeks after each dose increase. Levothyroxine is increased slowly in 25mcg steps, retesting each time. This continues until TSH is under 2 and FT4 in top third of range
extremely important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common, especially when the cause is due to high thyroid antibodies, which confirms cause of hypothyroidism is due to autoimmune thyroid disease also called Hashimoto's
My wife is 40 years old. Her doctor wrote this on a piece of paper :
"Normal T4 and TSH but Thyroid Peroxidase antibody high - 168.3 when normal is 35 or less"
Shes booked in for a TFT blood test in a months time but no mention of fasting, stopping meds before blood test etc or dietary needs. We told her doctors for a long time how bad (and how much worse) her temper and moods were and how bad the other symptoms were and they literally ruled out Thyroid until my wife got on the phone and broke down demanding further tests. When her doctor gave her these results she just said "Well at least you know now". Its been appalling and her doctors really do appear to not care.
Please buy the book from Amazon - The Thyroid and How to Keep it Healthy - by Dr Barry Durrant-Pearfield. There is a Chapter on ME/CFS/Fibro .. and lots more valuable information. We have to read and read ...
It's probably worth you getting a private blood test done. This will cover off whether she has vitamin deficiencies etc. The doctor seems very confused as my doctor was very worried when I tested at 28 and certainly 35 is not "normal" . Thyroid tests will give a range for the lab, but despite this, once diagnosed and on medication, you should be under 1.
You can't up a thyroid dose quickly but my starter dose was 50 then I went to 75 after 6 weeks and eventually I have been on 100 for a over 6 months.
Legally you have a right to a copy of your blood tests. You just ask the receptionist for a copy, you dont need to go through the doctor. This will ensure you get the ranges etc.. They wont think twice about it. You can also ask to be registered for one of the NHS apps, which means you can see your test results (test results module needs to be asked for, but you should also be able to request repeat subscriptions in this). I have all blood results, so I track what's happening.
Your wife should also fill in a form to get your prescriptions for free. Again ask at reception.
Any vitamins tablets, would take some hours from the levothyroxine as they can interfere. The no eating for 30- 40 mins after levothyroxine and taking on an empty stomach, also includes drinks e.g coffee. But water is ok.
Your wife's antibodies are high this confirms cause is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease). About 80-90% of primary hypothyroidism is due to autoimmune thyroid disease.
Hashimoto's affects the gut and frequently leads to low stomach acid and then low vitamin levels
Low vitamin levels affect Thyroid hormone working
The constant variation in Thyroid levels can make us feel very unwell, yet because of this constant variation in levels, TSH doesn't always reflect the situation.
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
Trying gluten free diet for 3-6 months. If no noticeable improvement then reintroduce gluten and see if symptoms get worse
Thank you all again so much. Sarah's cousin got in touch last night as she has had to have her thyroid totally removed. Shes very angry as Sarah was given that piece of paper, not told whether it was under or over active, not given any advice or told what the levothyroxine would do. She sent us this today:
"Things I would ask the doctor tomorrow.
1) do I have graves disease?
2) if yes what are we going to do to monitor my thyroid function? Ie. Regular blood tests and how often.
3) why am I taking levothyroxine? That's what you take when thyroid levels are under active, if I have graves disease shouldn't that mean my thyroid is overactive?
4) can you please write down all the results you got back on my last full thyroid function blood test for my own records
And go from there xxxx"
It does seem to me that her results indicate Graves or Hashimoto's. Her GPs are awful. I phoned before and was told that it wasnt an emergency. I've erupted and been told to call back at 1230 for an appointment. So frustrating.
Have a look at stop the thyroid madness, hashimotos needs to be dosed high enough to shut the thyroid down and stop antibody activity. I'd also INSIST your doctor tests all her antibodies including TgA, and TRab. You need a full thyroid panel including FT4, FT3 and TSH. You can get labtests privately from Blue Horizon, their Comprehensive V is a great bundle, you just add a FT3 test on top (often on special offer for free) and get the blood drawn at a Spire or Nuffield hospital.
25mcg of levo will make her feel worse not better, she needs an endo referral is possible, if you can afford it go private, ask here for a list of good doctors.
Once you've got a grip on the thyroid, I'd suggest finding a good nutritional doctor (I've been round the houses and now see someone trained in Nutrigenomics) and SLOWLY getting on top of all the underlying stuff that will be there (do not throw loads of supplements at it, us CFS / ME / thyroidy bunch seem to have funny reactions to things, buy a big desk diary and note down any changes, keep track, start low and slow, be methodical, because if she starts feeling worse you can back track and work out what did it)
For starters taking a good electrolyte drink like E-Lyte by Body Bio daily, and possibly a copper free mineral (Seeking Health do one, so do Vital Nutrients) and think about something like Body Bio Balance Oil - you need, first, to get a grip on the thyroid initially and to start to get her cell membranes stable. Feel free to send me a PM if you'd like.
Why would you want your TSH to DROP for a blood test? People with ME have paradoxical reactions to nutrients, and some cannot tolerate Mag Glycinate, hence my post further down to get proper help with a practitioner and go very slowly. I have ME and CFS and a car crash of endocrine problems and I've been at this for nearly 10 years, there's no one size fits all solution and I got myself into a terrible pickle by not being methodical.
Morley Robbins is a quack imho - he's made a lot of people very sick, and when they ask questions they get banned from his pages. I've been on NDT for more than five years and still have CFS - it's not that simple. It's a complex situation, which is why I've said below that first this lady needs to get a grip on her thyroid and then slowly and methodically sort out the rest. It's not as simple as 'take this' or 'take that' - it requires careful handling and support from someone who knows that they are doing.
I hope that, eventually, the thyroxine dose will increase and enable her to feel better, energy-wise and depression-wise. I have M.E and Hashimoto's too and, whilst it's not been the whole answer, it has definitely helped my health to become optimally medicated. This did take some time but don't give up.
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