I am ecperiencing symptoms of hypothyroidism: tiredness, hair loss, dry skin, weight gain, constipation, slow cognitive function as well as jumpiness, irritability, anxiety, sweatiness, edginess ( which I think is consistent with hyperthyrodism). But some days I feel balanced and well.
My latest NHS test was
TSH 0.14 ( 0.27-4.2) abnormal
Free T4 18.5 (11.0-21.2) normal.
I haven't spoken to my GP yet as I need to consider what to do next and she doesn't seem to know either. I know she'll bring up imminent menopause (am not there yet!) Am fed up of feeling like this.
I was diagnosed with Hashis 4 years ago. I'm taking 175mcg of Levothyroxine. I feel better after an increase of Levo for a few weeks and then I feel mostly crap again. I've been wondering if I have Chronic Fatigue AND Hashimoto's,but it's difficult to differentiate between the two.
Any advice would be appreciated. Thanks
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HealthyEmski
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My first guess would be that you have one or more of the following problems :
1) Low Free T3 caused by poor conversion from T4 to T3. Free T3 is a better indicator of "wellness" than either Free T4 or TSH. The problem is getting doctors to believe it. They think only TSH matters. If Free T3 is too high then people will suffer from hyperthyroid symptoms, if it is too low then people suffer from hypothyroid symptoms. The perfect level of T3 is individual to each person. Some feel great when T3 is 50% of the way through the range, some might need it to be 80% of the way through the range. There isn't just one right level.
2) Your nutrient levels might be too low. One of the effects of hypothyroidism is people having low stomach acid. This leads to indigestion, acid reflux, poor digestion of food, and poor absorption of nutrients from food. The nutrients of most relevance to people with thyroid problems are usually vitamin B12, folate, vitamin D, ferritin and iron. Some people discover they also have issues with zinc and/or copper. Practically anything people absorb from their diet can be at the wrong level. Conversion of T4 to T3 suffers when nutrients are low.
3) In Hashimoto's Thyroiditis levels of thyroid hormones and TSH (which is a pituitary hormone) can fluctuate as a result of the condition. Another problem is that gut inflammation is common. Many people have discovered that going 100% gluten free helps them a lot by damping down these fluctuations and reducing inflammation. You don't have to have coeliac disease to benefit from going gluten-free. It's worth an experiment lasting three months or so. If it makes no difference to you at all then you can go back to eating gluten.
Thank you, Human Bean. Excellent suggestions. I was wondering if T3 conversion might be an issue. I will have to get a test privately, and then discuss with my GP. I don't want her to reduce the Levothyroxine unnecessarily.
My nutrients tend to be low, especially ferritin and I supplement anyway. I'll need to have get them tested.
I was also wondering if adding a different type of thyroid hormone to Levothyroxine might be useful.
Many/most hypothyroid people in the UK have great difficulty in getting anything other than Levo. In years gone by people could buy their own T3 and their own NDT on the web or from abroad when they were on holiday. Unfortunately it is getting more and more difficult to get T3 and NDT online without a prescription and more and more countries are making thyroid hormones prescription only. It isn't impossible by any means, but be prepared for a long haul.
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Some people are lucky enough to find a private endo who will provide a private prescription.
But sadly many endos don't "believe in" T3 or NDT, which is a bit like a doctor saying they don't believe in vitamins or antibiotics.
Many doctors have never even heard of NDT despite it being the main or only treatment for hypothyroidism for about 70 years, and there were companies making it in the UK until about 1985.
Some of the comments members have reported from doctors are absolutely horrifying :
One unfortunate member of the forum was told by an endo that T3 "has no purpose and is a waste product".
Someone else was told that T3 converted to T4, not the other way around.
Another member had her Levo reduced because her TSH was "too high".
Other members have had doctors tell them that thyroid hormones are addictive (which makes one wonder why hyperthyroid people ever seek treatment).
Doctors have compared thyroid hormones to cocaine, heroin or speed.
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I have no idea what prompted my little rant above. It might be because its after 2am.
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Optimising your nutrients, going gluten-free, and eating a good diet will be a good start towards feeling better. (Note that opinions vary on what classifies as a good diet!)
Please do rant away! I share your frustration as I've experienced contradictory advice from medical professionals. I've tentatively broached the issue of T3 with all my NHS endos who were adamant that it wasn't effective or had been made obsolete by Levothyroxine. The difficulty of getting T3 is apparent.
I take nutrients and have a good diet but my vit and mineral levels are always just average. I think the stomach acid factor is in play. Thanks again.
If your vitamins and minerals are not optimal you could be missing out on feeling a lot better. I wrote this post to highlight the difference between my own results when nutrient levels were poor and what happened when they were as optimal as I could get them :
For full Thyroid evaluation you need TSH, FT4 and FT3 tested.
Also EXTREMELY important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common with Hashimoto’s
Ask GP to test vitamin levels
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .
Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins
As you have Hashimoto’s are you on strictly gluten free diet?
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
While still eating high gluten diet ask GP for coeliac blood test first or buy test online for under £20, just to rule it out first
The predominance of Hashimoto thyroiditis represents an interesting finding, since it has been indirectly confirmed by an Italian study, showing that autoimmune thyroid disease is a risk factor for the evolution towards NCGS in a group of patients with minimal duodenal inflammation. On these bases, an autoimmune stigma in NCGS is strongly supported
In summary, whereas it is not yet clear whether a gluten free diet can prevent autoimmune diseases, it is worth mentioning that HT patients with or without CD benefit from a diet low in gluten as far as the progression and the potential disease complications are concerned
Despite the fact that 5-10% of patients have Celiac disease, in my experience and in the experience of many other physicians, at least 80% + of patients with Hashimoto's who go gluten-free notice a reduction in their symptoms almost immediately.
Getting vitamin levels optimal frequently improves conversion of Ft4 to ft3
If after all these steps Ft3 remains too low, many Hashimoto’s patients need small doses of T3 prescribed alongside levothyroxine
But important to take the other steps first to get vitamins optimal and trial Gluten free diet, sometimes dairy free diet too
Meanwhile
Email Dionne at Thyroid UK for list of recommend thyroid specialist endocrinologists...NHS and Private, who will prescribe T3
I take the same brand of Levo ( North star and Mercury Pharma; not Teva as it made me feel funny). I also take Solgar Selenium 200mcg, Vit D3, Solgar Zinc and Magnesium. My magnesium was 0.85 (range 0.7-1.0), and my serum calcium 2.33 ( 2.15-2.6). I did ask for ferritin but that wasn't done for some reason.- will go back to GP. Am gluten-free too.
I feel very frustrated- like I'm on a hamster wheel: blood tests; begging doctors to take me seriously; feeling no better for most of the time; more blood tests etc.
Get bloods retested privately after minimum of 6-8 weeks on only EXACTLY same brand of levothyroxine
Likely you have low Ft3
Essential to test vitamin D, folate and B12 plus ferritin
All thyroid tests should be done as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test
Do you normally take levothyroxine waking or bedtime?
Physicians should: 1) alert patients that preparations may be switched at the pharmacy; 2) encourage patients to ask to remain on the same preparation at every pharmacy refill; and 3) make sure patients understand the need to have their TSH retested and the potential for dosing readjusted every time their LT4 preparation is switched (18).
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