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Thyroid UK
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Miasthenia Gravis and Hypothyroidism

Hi folks, I've posted here before about my own problems with hypothyroidism and no thyroid gland and your comments were extremely helpful. Today the problem is not mine but my sister-in-law. She suffers from Miasthenia Gravis but also from hypothyroidism, although she still has a functioning thyroid gland. She is currently on 25 mcg of levothyroxine but is suffering badly with anxiety, causing lack of sleep. She obtained her bloods from a recent test and having seen the results I am surprised at the reaction from her GP. The only test that was done was the TSH, nothing else was tested for, no T4 or anything else that may contribute to her symptoms. Her result was 4.7 on TSH. I suggested that she see her GP and tell her that she has sought advice and that her dose is far too low and needs increasing to bring her down to the lower end of the scale. Do any of you have any other advice that I can pass on as she is getting desperate and it would appear that her GP is not very experienced with thyroid problems? Should she request a full blood test taking into account things like liver function, haemoglobin and ferritin levels and also her T4 reading or am I not knowledgeable enough. Thanks for any advice that you can give.

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Dicktwo,

If your SIL's TSH is 4.7 on 25mcg Levothyroxine she is undermedicated and should request a dose increase.

The goal of Levothyroxine is to restore the patient to euthyroid status. For most patients that will be when TSH is 0.2 - 1.0 with FT4 in the upper range. FT4 needs to be in the upper range in order that sufficient T3 is converted. Read Treatment Options in thyroiduk.org.uk/tuk/about_... Email dionne.fulcher@thyroiduk.org if you would like a copy of the Pulse article to show your SILs GP.

If her GP can only order TSH your SIL can order a private thyroid test to include FT4 and FT3 and thyroid antibodies if they haven't already been tested. I suggest she waits until TSH is around 1.0. thyroiduk.org.uk/tuk/testin... Medichecks offer #ThyroidThursday discounts.

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Thanks Clutter, that's more or less what I told her. When my GP ordered bloods for me he covered the whole gamut including T4 and the rest that I mentioned above, so I presume that any GP can order the lot. I'll pass your comments on to her. Thanks again.

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Dicktwo,

Not all GP practices can order TSH, FT4 and FT3. Worth her asking though.

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thanks, I'll get her to ask

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Thanks Clutter, that's more or less what I told her. When my GP ordered bloods for me he covered the whole gamut including T4 and the rest that I mentioned above, so I presume that any GP can order the lot. I'll pass your comments on to her. Thanks again.

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I think you sister inlaw needs to see a different GP. Ideally she needs her TSH, t4 and T3 done along with her vitamin d, vitamin B12, ferritin and folate tested. She is undermedicated and will feel ill with TSH so high.

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Mandyjane.

Thanks for this, I'll pass it on to her. She's booked to see her GP Monday so she can now go fully armed. Thanks

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I am sorry your sister-in-law is suffering. I really don't know why doctors or Endocrinologists are so unknowledgeable.

25mcg is an incremental dose. 50mcg is a starting dose with a blood test every six weeks with an increase of 25mcg until symptoms are relieved and/or TSH is 1 or lower.

If she can afford a Full Thyroid Function Test, she can contact Medichecks or Blue Horizon who do home pin-prick tests. If she decides to do this make sure she is well-hydrated a couple of days before drawing blood. If she wants someone to draw blood either lab will give information.

The blood draw should be at the very earliest possible, fasting (she can drink water) and if she was taking thyroid hormones she'd allow a 24 hour gap between dose and test and take it afterwards.

GP should test B12, Vit D, iron, ferritin and folate.

Lab should test, TSH, T4, T3, Free T4, Free T3 and thyroid antibodies.

thyroiduk.org.uk/tuk/testin...

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thanks your info is detailed, I'll pass it on. Thanks again

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Your S-I-L is very under medicated on 25mcg

50mcg is standard starter dose unless elderly, frail or heart issues

Nice guidelines saying how to initiate and increase. Most patients need increasing slowly to somewhere between 100mcg and 200mcg Levo

cks.nice.org.uk/hypothyroid...

Official NHS guidelines saying TSH should be between 0.2 and 2.0 when on Levothyroxine

See box

Thyroxine replacement in primary hypothyroidism

pathology.leedsth.nhs.uk/pa...

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My sister in law wants me to thank you all for the excellent advise that you all offered. Armed with it she saw her GP today, who still insisted that she was "borderline" and that her symptoms of anxiety were what she would have if she had hyperthroidism. However my sister in law managed to persuade her GP that anxiety is also a symptom of hypothyroidism, as per the Thyroid UK checklist. Her GP agreed to increase her dose by 25 mcg. I had misheard her when she said what her initial dose was, it was in fact 50mcg, however it was still too low but now she has a raised dose and needs a new blood test in 3 months. Her GP is still reluctant to test for anything else so I've offered to send her my results for when she goes next time, to show that her GP should be testing for a lot more than she is. I despair of GPs who will not listen to their patients when it is clear that having taken advice, the patient knows more about their condition than the GP. In these cases you would expect the GP to research the condition more instead of just carrying on blindly. Thanks again.

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