Strange case of hypo? : Hi all - I'm new here. I... - Thyroid UK

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Strange case of hypo?

Suze3748
Suze3748

Hi all - I'm new here. I'm having a hard time getting doctors to adequately diagnose me, although now I finally have 50 mcg of levothyroxine daily. I've been having pretty severe symptoms of hypo for over a year that have gotten increasingly worse - numbness/tingling in limbs, inability to lose weight, tiredness, hoarseness/difficulty breathing, depression, dry skin, body aches... these all seem to track with my menstrual cycle - getting worse at ovulation and just before my period.

Doc took TSH in July it was 3.0 (that was day 17 of my cycle), B12 was mid-range normal, other tests normal range.

In August, I continued to have worsening symptoms and took a private test, TSH was 1.0 (day 22 of my cycle) with T4 - 12.0, T3 -1.27 (nmol/L), anti-TPO (<3.0, U/mL w/ reference range <5.0 is normal).

A week later (Day 5 cycle) took a TSH/T4 test at doc, TSH - 8.0, T4 13.0.

3 days later I just took another test (haven't got the numbers yet) but the doc called and said TSH is still high and prescribed me levothyroxine 50 mcg / day.

Anyone have a clue what's going on here? The doctors don't seem to think it's very severe but my symptoms were so bad I ended up in A&E last week bc I couldn't breath.

Hope someone has an idea! Thanks in advance!

4 Replies
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Forgot to add that my calcium was the lowest end of the normal range, vitamin D just under the normal range

You are right in that TSH varies considerably during the menstrual cycle, see the bottom two graphs in Fig 1 of this study frontiersin.org/articles/10... .

The most common cause of hypothyroidism is autoimmune thyroiditis (Hashimoto's disease). The thyroid is damaged by autoimmune antibodies and during this process it can have irratic secretion / release of hormones, particularly T3 which is the active hormone. This could cause your TSH level to jump around.

Regardless of the above you are undermedicated. You don't give the reference intervals for your blood test results but a typical fT4 interval is (12.0 - 22.0). Normallly when treated with levothyroxine the TSH will need to be around 1.0 or lower and this puts fT4 up around 18 or 20. The fT4 is higher in levothyroxine treated patients because they don't get the T3 that a healthy thyroid secretes. Your doctor should give more attention to your symptoms and not focus on the blood tests so much. Your current dose is too low, it is likely you will need at least 100 mcg levothyroxine. Make your doctor aware of your symptoms and ask them to treat the symtoms not the numbers. Dry skin is very specific to hypothyroidism. All your other signs and symptoms are hypothyroid related. I don't know about symptom links to menstrual cycle as it's never bothered me!

The title of your post "Strange case of hypo?" is completely wrong, this is a very, very typical case of hypothyroidism.

Suze3748
Suze3748 in reply to jimh111

thanks so much for your reply - that's good to hear that it's not so strange - the doctors are very reluctant to look at anything but the numbers it seems. They've basically been treating me like I'm crazy and trying to prescribe me anti-anxiety medication/asking me if everything's ok at home, etc. That's why I thought it was strange - the fluctuation... but interesting to hear that it's typical

Don't take the anti depressants - they are worth money to the GP practice which is why they are so keen to prescribe them instead of dealing with your physical symptoms. You need a blood every 6 weeks and an increase of 25mcg levo until TSH is under 1 and Free t4 (and free t3, but NHS usually won't test it) are in the top quarters of their ranges. Going gluten free often helps with the autoimmune side of things. Tingling suggests low B12 or calcium (both potentially serious and should be addressed) and breathing problems possibly low iron. Might be helpful to see a different doctor.

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