I am posting on behalf of my wife, she does not feel well enough to advocate for herself and that's why I have set up an account for her. She has Hashimotos, she has been sleeping rather badly (waking up early, waking up later on some mornings unrefreshed), complaining of cramps in her stomach from constipation, flaky skin all over her arms, body and face, feeling cold, her hands and feet are cold, she has bags under her eyes. Period blood very thick and heavy, the last time she has her period it looked like someone had knifed her, there was that much blood. Her moods are often really bad, she loses things and she has been forgetful. She saw a nutritionist in 2014 who was recommending her to take all manner of supplements but this was without the use of tests and she did not want to take anything she doesn't know she is deficient in or not. She is also really unsure about what dose of levothyroxine she needs to be on, she stopped this from January 2018 - February 2018 and she has since been taking 50mcg from March 2018 onwards.
Welcome to our forum on behalf of your very unwell wife.
Most on this forum are people who haven't recovered their well-being through doctors or endocrinologists but have when following the advice from many of our excellent members.
Hashimoto's is also called an Autoimmune Thyroid Disease, and this is due to thyroid antibodies attacking the thyroid gland until the person is hypothyroid.
In the UK the professionals' recommendation is that we should not be prescribed levothyroxine until the TSH is 10, ignoring all of the unpleasant symptoms which can occur i.e. female problems one of the many.
Both FT4 and FT3 are too low and shoud be nearer the upper part of the range and symptom-free.
Levothyroxine is the commonest form of thyroid hormone replacement in the UK and dose starts at 50mcg with 25mcg increments until patient feels well and symptoms are relieved.
Countries abroad prescribe if the TSH goes above 3 and your wife's is above the range so I do hope doctor will prescribe levo now.
Many patients have sourced their own thyroid hormone replacements but we don't put info on the forum but private message can be sent to the person, if requested and stipulating by a private message.
Your wife also needs B12, Vit D, iron, ferritin and folate tested. Everything has to be optimal.
All blood tests for thyroid hormones has to be at the very earliest, and fasting (you can drink water) and allow a gap of 24 hours between last dose of levo and test and take afterwards. Food interferes with the uptake of the hormones so the majority take it when they awake with one full glass of water and wait an hour before eating.
Blood tests should be every six weeks with a 25mcg incremental dose until patient has relief of clinical symptoms and because surgeries are pretty busy, I'd make appointment in advance. One of our doctor's now deceased, pleaded for changes in the diagnosing/prescribing as he said many of us were put in Parlous Situations due to the modern rules. He was taught at a time when only symptoms were considered (no blood tests then) and that's why so many remain undiagnosed/unwell/very unwell.
Post any results, with the ranges for comments when next blood test is taken and I do hope your wife will be prescribed.
Thank you , she is really unsure about what dose of levothyroxine she needs to be on, she stopped this from January 2018 - February 2018 and she has since been taking 50mcg from March 2018 onwards.
Initial dose is usually 50mcg of levo and a blood test every six weeks followed by a 25mcg each time until TSH is 1. Many doctors believe that if TSH is 'anywhere' in the range, even top that no more levo is required. That's not the case. TSH of 1 is desired and some even need it suppressed.
Also going gluten-free can help reduce the antibodies and the attack of the thyroid gland.
Most of us on this forum will not be surprised she stopped and it is because we feel far worse than before being diagnosed.
The other problem in the UK, is that the authorities have reduced and reduced other types of thyroid hormones which used to be prescribed down to levo alone.
I myself was far worse on levo than before I was diagnosed and my TSH was 100 (due to inept doctors/or A&E) diagnosing me.
Through Thyroiduk.org.uk I found that there were other 'thyroid hormone replacements'. I now take no levothyroxine but self-medicate on liothyronine. Some benefit adding liothyronine (T3) to T4 (levothyroxine): some on T3 alone and others on the original thyroid hormones - called NDT - the first introduced in 1892 and before that we died. NDT was used up until the introduction, I believe in the 60's of levothyroxine and even in the UK, they first withdrew NDT (rumours abounded about problems with it etc. (disproven) and very recently T3 due to the pharma companies increasing the cost exorbitantly. Up to about £600 per month.
NDT means 'natural dessicated thyroid hormones' made from pigs' or cows thyroid glands. It contains all of the hormones a healthy gland would have i.e. T3, T4, T2, T1 and calcitonin. The following was an article written by one of our Advisers before his death and despite three yearly reminders they never did respond. So it would seem the patients' sources of alternatives became so small that only levo is prescribed.
NDT can be more conducive to the human body being made from animals. Levo some cannot (although many seem to have no bother with it) respond or feel an improvement.
Her heart rate is really low, she had thyroid bloods done 2 weeks ago. Her GP booked her in for an appointment but this has now been removed, is it best to speak to her endocrinologist or wait until tomorrow morning to call GP?
Low pulse and low temp are two of the many symptoms we can have. As dose is increased so do these two.
Her dose of thyroid hormones are too low which means her TSH has risen trying to flag up some hormones which is difficult when thyroid gland has few and that's why she doesn't feel well.
Also antibodies attack the thyroid gland and sometimes some people feel 'hyper' (not hyperthyroid) and at other times 'hypo'.
(I will state that I'm not medically qualified but have also ran the gauntlet as have many of our members.)
You can speak to the Endocrinologist as he should know what he's prescribed and I hope he is also not against adding T3 to T4 as thousands have withdrawn it in the past few months.
He is only against it because the Pharma companies increased cost too much.They have also been told not to prescribe as have GPs. Mine told me but I source my own otherwise life would be more than difficult.
This is a past post and the person has taken her Petition to The Scottish Parliament and it has been ongoing for about 3 years.
This case is not unusual but Lorraine is a 'woman with a cause' and now has a Facebook page.
Dr Skinner the last remaining doctor who 'treated patients' but not the results of a blood test prescribed for Lorraine and she recovered her health. He was pursued by the GMC quite a number of times and died of a stroke but few doctors would have had 10,000 testimonials from patients whose 'lives he saved'.
Her current results show she is very under medicated. Dose should be increased in 25mcg steps until TSH is around one and FT4 towards top of range and FT3 at least half way in range
Bloods retested 6-8 weeks after each dose increase
All thyroid tests should be done as early as possible in morning and fasting and don't take Levo in the 24 hours prior to test, delay and take straight after. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)
Essential to test vitamin D, folate, ferritin and B12. Always get actual results and ranges. Post results when you have them, members can advise
Hashimoto's affects the gut and leads to low stomach acid and then low vitamin levels
Low vitamin levels affect Thyroid hormone working
Ferritin likely low with such heavy periods. Full iron panel testing for Anaemia recommended
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 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
But don't be surprised that GP or endo never mention gut, gluten or low vitamins. Hashimoto's is very poorly understood
Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine,
"The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l.
In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l.
Most patients will feel well in that circumstance. But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.
This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l)."
You can obtain a copy of the articles from Thyroid UK email print it and highlight question 6 to show your doctor please email Dionne at
tukadmin@thyroiduk.org
Also request list of recommended thyroid specialists
Professor Toft recent article saying, T3 may be necessary for many.
Before considering T3, vitamins must be optimal, most likely essential to be strictly gluten free, dose of Levo slowly increased until TSH around one and FT4 towards top of range.
If after all these steps, FT3 remains low then may need addition of small dose of T3
Thank you, she holds herself accountable for the stopping of the medication and the reductions. She just did not feel well at all on higher doses. She was on 25mcg Levothyroxine in Dec 2017. Her endocrinologist said there was no reason for her symptoms on higher doses.
Your wife probably felt unwell due to low levels of vitamins and minerals. B12 is better over 500 - Folate and Ferritin mid range and VitD around 100. Thyroid results would then improve 😊
Thank you, these may have changed 2 weeks ago. She had her prescription review tests at that time and she was due to see a doctor tomorrow but her appointment has been removed.
She had symptoms because her FT3 was too low, because she wasn't converting properly! Stupid endo. They know nothing!
There can be all sorts of reasons for poor conversion, and low nutrients are one of them. So, she should supplement those before taking her dose up high again. And if that doesn't improve her conversion, she should add some T3 to her levo. Her doctor might not approve, but it's not his life that's being affected. You can buy your own.
Yes it's very common to feel better after stopping Levothyroxine. But it's only very very temporary. Basically with sudden reduction in FT4 after stopping medication, you get temporary improvement in conversion. Usually lasts above a week or so before complete crash.
Email Thyroid UK for list of recommended thyroid specialists, some are T3 friendly
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