Hi Everyone, I've had severe underactive thyroid symptoms for 3years with noticeable loss of eyebrows and scorching temperature in hands and loss of hearing but my blood were in normal range. Started to increase T4 to suppress symptoms. Which worked for a short time. Now over treated. TSH at 0.5 hair loss is acute. Private blood test shows RT3 Nhs will not acknowledge this test or change my thyroid medication. Also stopped testing T3.
Basically being allowed to go under whilst being told everything is normal.
Anyone else in the same situation. No support from Nhs whatsoever.
Thyroid Specialist stated he will discharge me after one appointment.
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Karen154
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We can't just increase T4, especially if have low vitamin levels and/or cortisol issues
Post your results and ranges for advice from members
Essential to know if you have high thyroid antibodies, this is Hashimoto's also called autoimmune thyroid disease
About 90% of all hypothyroidism in Uk is due to Hashimoto's
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 addect Thyroid hormone working
Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten
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)
But don't be surprised that GP or endo never mention gut, gluten or low vitamins. Hashimoto's is very poorly understood
Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies
Thanks for your reply. I will look up my vitamin ranges. However the lab on longer test for general vitamin deficiency. I have told I am converting t3 and they will not knowledge RT3.
RT3 result is 25 evaluated. I read this result as above positive. The practice say it is negative. Whichever way you read it, it's there. Also changes in kidney and liver but in normal range.
Thyroid specialist wrote stating all bloods normal but no ranged for antibodies T3 or T4. Every acceptable isn't it.
The practice confirm ranges normal, converting of T3 fine. Offered my counseling to come to terms with loss of hearing and hair. But no change of thyroid medication.
Couldn't make this sh** up! Talk about bang your head against a wall.
Hello Karen154. Good day to you. Have you already given your blood test results? sorry if you have but I can't see them! Please post them if you haven't already. What do you mean by 'addect'.Just trying to follow your meaning. thanks
SlowDragon Do you know if us who are not Hashmitos hypo do we have to be gluten free or can who are just Hypo from part thyroidectomy just eat normal diet and do we have to have Vitamins at high end of Range? , Thanks
Hi Slowdragan, The specialist has stated I'm over treated and reduced the T4 to increase my TSH. Did 5 tests but only forwarded one test of TSH. Also I've noticed my thyroid tests are always incomplete as never done together despite request make on one form. So impossible to get the full picture from the NHS.
Test tests 3.1.18 T4 20.06
TSH ,0.05
No T3 back from lab
No thyroid antibodies
Vitamin B12 525
Ferritin 47
Vitamin A, E,C and RSA rejected by lab as not clinical necessary.
Can you add ranges to these test results if you have them
Test results with no ranges are meaningless
Many so called "thyroid specialists" seem to have absolutely no idea
When were these tests gone?
TSH, FT4 and FT3 MUST be tested at same time
If you have Hashimoto's then strictly gluten free diet is first step. Improving vitamin levels essential.
Always take Levo on empty stomach and then nothing apart from water for at least an hour after. Many take on waking, but it may be more convenient and possibly more effective taken at bedtime
Many people find Levothyroxine brands are not interchangeable. Once you find a brand that suits you, best to make sure to only get that one at each prescription.
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
For full evaluation you ideally need TSH, FT4, FT3, TT4, TPO and TG antibodies, plus vitamin D, folate, ferritin and B12 tested
Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have money off offers.
Nhs won't acknowledge the RT3 and it has been removed from my records. Also reported stated evaluated but recorded as N/A by nhs. Kinda of makes me wonder if it's worth having tests as depends who's reviewing them.
All thyroid tests are requested together but the lab will do either t4 or T3.
A low TSH does not automatically mean that you are over-treated. You need to see your Frees to determine that. If your FT3 is still in-range, then you are not over-treated. But, if your rT3 is high, it sounds as if you aren't converting your levo to T3 very well. Which will mean that, although your TSH is low, you are still hypo.
Can you post all the results of your private tests, with ranges?
Hi greygoose, the specialist has stated I'm over treated and reduced the T4 to increase my TSH. Did 5 tests but only forwarded one test of TSH. Also I've noticed my thyroid tests are always incomplete as never done together despite request make on one form. So impossible to get the full picture from the NHS.
Test tests 3.1.18 T4 30.06
TSH ,0.05
No T3 back from lab
No thyroid antibodies
Vitamin B12 525
Ferritin 47
Vitamin A, E,C and RSA rejected by lab as not clinical necessary.
Well, he may call himself a 'specialist' but 'specialist' in what? Not thyroid, that's for sure. Diabetes, probably. The is absolutely no clinical reason to raise TSH. It doesn't matter how low it is, as long as your FT3 is in-range. But, as you don't give ranges, it's impossible to say.
If you did private labs, surely you have all the results together on that, no?
It looks like your ferritin is probably low.
I agree with the lab, not really necessary to test A, E and C. There are far more important things that need testing.
Hello Karen154, I know this won't help you much but yes I am in a similar position where I felt well for a very short period of time on T4 but began to feel horrid again, very symptomatic. I haven't had my RT3 measured but would guess it is high. My GP has reduced my Levo as my FT4 was well over range and TSH very suppressed in order to bring my FT3 to a reasonable level. He claimed long term I could develop osteoporosis and atrial fibrillation. As I am still symptomatic he says he can't help me any more and I need to find a good endo. I am now trying to source T3, and a 'good' endo. If you have read other posts, your hair loss could be due to low ferritin levels. I'm not sure if you are saying your RT3 is high?
I think we need to on a combination drug to help with T3. But there is no funding in the NHS so we are unlikely to be treated. My hair is falling out with altering T4 dose. I'm looking into it. Keep in touch. I think NHS specialist can prescribe this if there is a clinical need. But they work against you and with you. Don't even have the decency to say go private for this treatment. Calculating way they don't do all bloods tests together so they never find clinical need
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