I would be interested to hear from anyone, particularly those who have taken thyrostim, iodine, t-convert along with their daily dose of levothyroxine. (Didn't take the meds together. Thyroxine etc morning. Levothyroxine bedtime. I have been taking the medication since last October 2018. I consulted a nutritionist after being told by my employer that I was too slow). Since starting the supplements, I have felt good, only occasionally exhausted, brain fog, sore feet, headaches, and unable to get out of bed.). However, following a blood test, I was told by my new gp, that my tsh level is too high and I was misdiagnosed 24 years ago despite regular blood tests to confirm hypothyroidism. The gp has told me to stop the levothyroxine completely. I am not happy with this and wondered what will happen now I've stopped everything? Does this mean my thyroid gland has started working again or will the readings change now all the supplements and levothyroxine has been stopped. Can anyone help? Have also been referred to endocrinologist? Would prefer to go private if anyone can recommend a good doctor. I'm living in Berkshire. Thanks x
Thyrostim, iodine, t-convert levothyroxine and ... - Thyroid UK
Thyrostim, iodine, t-convert levothyroxine and elevated TSH level
If your TSH is "too high", that indicates that you are hypothyroid and your GP is talking nonsense telling you to stop taking your levothyroxine. If he thinks an elevated TSH indicates that you were wrongly diagnosed, and aren't hypothyroid at all, he should be given a wide berth and you'd be well advised to see another GP to have your Levo reinstated - it is the most basic of diagnosis that the pituitary gland produces more TSH in an effort to stimulate the thyroid gland to produce more thyroid hormones when they are low. Additionally, if you have been taking Levothyroxine for 24 years when not being hypothyroid, your blood test results and symptoms would have indicated that you were ingesting exogenous thyroid hormones unecessarily/excessively. Even if it were the case that you were over-medicated, you should taper your meds, not stop them cold turkey as your GP is instructing you to do. But I think you may have muddied the water by taking iodine, and thyrostim which also contains iodine, as it's important that iodine is not supplemented unless you are first tested and shown to be lacking in iodine, and only then under the guidance of an suitably knowledgeable clinician as iodine can have an anti-thyroid effect - it was used to treat hyperthyroidism in the days before modern drugs were developed for that condition. So if you add the blood test results and their reference ranges on which your GP has based his decision to stop your Levo, more specific feedback can given; but in any case, an elevated TSH indicates hypothyroidism, not euthyroidism.
The good news is that doctor want you to see an Endo and hopefully one who will tell him he is wrong! Took me a while to get my head around high TSH means more medication but he has no excuse-I was in shock with my diagnosis! Have a look at the Thyroid U.K. site on how to find if someone in your area has recommended one and then ask your doctor to refer you. When you go remember to tell him what your doctor has said and in the mean time just tell your doctor that you want to remain as things are until you see the Endocrinologist.
I was prescribed iodine once, by a doctor who did no tests, asked no questions and just accused me of being hysterical (iodine as a cure for hysteria?). Trouble was, in those days, I was as ignorant as him! And I wouldn't wish iodine on anyone! I already had hypo symptoms, like weight-gain and hair-loss, and the iodine made everything ten times worse. You should never take iodine with getting tested first to see if you need it.
As for your supplements: Thyrostim and T-convert, the name of the first one says it all. The last thing you should do to a sick gland is try to stimulate it. It just burns out faster. It contains iodine - don't know how much, nor how much you're taking, but you're already getting 65 mcg iodine from every 100 mcg levo you take, plus what you get from your food. So you're probably extremely over-dosed on iodine.
Both of these supplements contain copper - T-convert contains 800 mcg, don't know about the other one - but the point is, hypos usually have high copper and low zinc. In which case, they really don't want to add more copper. So, that's another thing you should get tested before supplementing.
The both contain magnesium, too - although probably not too much - but one contains magnesium oxide, amongst other forms, and the other contains magnesium aspartate (among others). Neither of those forms of magnesium are well absorbed, so a total waste of money.
And, that's the thing about these multi-type supplements, they are a waste of money. They cater to the Worried Well, and are a good money-spinner for the companies that manufacture them. They are never going to do you any good, and can possibly do you harm - i.e. by containing things your shouldn't be taking, like iodine and copper. If I were you, I would stay well away from them. 
WOW !!! What a story . I'm afraid that it was the Dr that had some hysterical moments himself . What ignorance ???? And to think that peoples lives are in their hands . Heaven Help Us .
He was a horrible man - didn't like women and didn't like children. And, the worst is, he's still practicing! I wonder how many people he's killed…
I'm surprised that his still practicing . They should have closed down his practice long ago . His not worthy to be called Dr . I'm glad you found someone that can help you feel well . What a story ????
Oh, my dear, you haven't heard the half of it! lol
I have No Doubt that this so called Dr has a few surprises up his sleeve . I'm just shocked that people still use him after all he puts them through ?
No doctor should ever change dose of Levothyroxine based just on a TSH
And if TSH is too high you needed a dose increase
On Levothyroxine the aim is bring TSH down to around one and FT4 near top of range and FT3 at least half way in range
First thing is, do you have any actual blood test results? if not will need to get hold of copies. You are legally entitled to printed copies of your blood test results and ranges.
UK GP practices are supposed to offer online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.
In reality many GP surgeries do not have blood test results online yet
Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up.
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common, especially if Thyroid antibodies are raised
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)
Last Levothyroxine dose should be 24 hours prior to test, (taking delayed dose immediately after blood draw).
Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or all vitamins
thyroiduk.org.uk/tuk/testin...
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 special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random
If antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).
About 90% of all primary hypothyroidism in Uk is due to Hashimoto's.
Low vitamins are especially common with Hashimoto's. Food intolerances are very common too, especially gluten.
So it's important to get TPO and TG thyroid antibodies tested at least once .
Link about thyroid blood tests
thyroiduk.org/tuk/testing/t...
Link about antibodies and Hashimoto's
thyroiduk.org.uk/tuk/about_...
thyroiduk.org.uk/tuk/about_...
Iodine is NOT recommended for someone with Hashimoto's
drknews.com/iodine-and-hash...
How long since you stopped dose?
Suggest you get full Thyroid and vitamin testing asap
Ideally should be after 6-8 weeks on constant unchanging dose
Please re consider iodine. I was taking multi vitamins which gave me too much iodine and it really played havoc with my thyroid.
I will ask for a copy of the results tomorrow and post them on here for comment. Thank you
Did you get copies of these results?
You really need to see them
GP made catastrophically wrong decision to stop Levothyroxine
I did get a copy of the results but they were all gobbledygook and I couldn’t know what I was reading. It just looks like a long list. Also I wanted to scan it in but GPs name is next to each result. Thanks x
The results that are important are
TSH
FT4
FT3
TPO antibodies
TG antibodies
Vitamin D
Folate
Ferritin
B12
Very unlikely to have had all these tested
We need ranges too - figures in brackets after each result
You can black out Doctors name (and your own ID details ) with feltpen and then scan in - perhaps on new post rather than here. You can only add one photo per post
Thanks Slow Dragon. Some of the results don't have ranges. I've listed below the results of some of the tests done 23/07/18. I couldn't see FT3 result.
TSH = 0.15 mu/L (0.27-4.2)
FT4 = Serum free T4 level = 14.5 pmol/L
FT3 =
TPO antibodies = < 4 IUl/ml original result 4 iu /nO (0-24)
TG antibodies - Serum goblin = 26 g/L
Vitamin D = 55 nmol/L
Folate = 10.5 ug/L
Ferritin = 44 ug/L
B12 = 604 ng/L
So TSH was slightly low - very common on Levothyroxine
FT4 - difficult to say without ranges. But 14 is usually low in range. Typically ranges is 12-22, but it does vary. Can you find out?
If FT4 is low, this suggests you needed dose increase
No FT3 test.
Vitamin D too low
GP will only prescribe to bring vitamin D up to 50nmol. Aiming to improve vitamin D by self supplementing to at least 80nmol and around 100nmol may be better .
Once you Improve level, very likely you will need on going maintenance dose to keep it there.
Retesting twice yearly via vitamindtest.org.uk
Vitamin D mouth spray by Better You is good as avoids poor gut function.
It's trial and error what dose each person needs. Frequently with Hashimoto's we need higher dose than average
Local CCG guidelines
clinox.info/clinical-suppor...
Government recommends everyone supplement October to April
gov.uk/government/news/phe-...
Ferritin also looks low
Ask GP for full iron panel test for Anaemia
Eating liver or liver pate once a week, plus other iron rich foods like black pudding, prawns, spinach, pumpkin seeds and dark chocolate, plus daily vitamin C can help improve iron absorption
Thank you so much Slow Dragon. It's good to know I'm not imagining all my symptoms. I feel like such an idiot going to the doctor only to be good I am fine. I know I am not fine by any stretch of the imagination x
Look back through old blood test results to see if you can find range on FT4
Always get actual results and ranges on all blood tests from now on
Someone on Levothyroxine is ONLY over treated if FT3 is over range
Frequently low vitamins caused by being under treated, then results in low TSH, yet FT4 and FT3 are low
GP was extremely wrong to tell you to stop Levothyroxine completely. And even if you did need any tiny dose decrease (unlikely) bloods should have be retested after 6-8 weeks. Absolute maximum anyone who have dose reduced is by 25mcg at any one time
But it looks like you needed small dose increase. Best confirmed by getting FT4 ranges. Ask GP tomorrow what FT4 range is. If top of range is higher than sixteen, you definitely did not need dose decease. If top of range is twenty two, then you needed dose increase
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
Thanks. I will print the article and and it with me. I will get the ranges. I'm quite concerned now as the surgery phoned today. Apparently, the gp hasn't referred me to the endocrinologist but to a neurologist and lung specialist. He thinks my symptoms are neurological and he believes I have sleep aponia. Should I see another gp?
Sorry to jump in when you have been getting fabulous advice but
YES!!! See anyone else.
Hope you get a proper gp to see. Xx
Thank
Many GPs think we have a neurosis and then foist antidepressants on us or refer us to a psychologist or psychiatrist. This one thinks you have a psychosis (i.e physical brain damage), and has therefor referred you to a neurologist.
We couldn't possibly feel depressed because we are so sick, right? And if that's the cause, then maybe, just maybe, improving our physical health will improve our mood, no?
My mom, who has subclinical hypothyroidism, was offered antidepressants the other day, despite the fact that her internist acknowledges that she needs some Synthroid but thinks it will affect her heart (the lack of it actually affected her heart). She told him she is absolutely not depressed and wants the proper treatment, so he finally relented. Unbelieveable! This took years to get a prescription for 25 mcg! In the US!
Oh no! I’m so sorry. That should never happen. Where in the US? I’ve never had a problem but like anything, it’s very individual.
Well, as you get older, some doctors (doesn't matter what country - vocalEK in the US has posted on this too) - have decided that you are not worth treating. My mom at 86 has to fight with doctors to get her care (and she has private insurance as well as Medicare). This is becoming a problem everywhere. Having family in your corner to help makes a big difference.
I’ve been fortunate with my mother. She is 96 and in better health than I am. She has a great doctor who also treated my father before his death. I agree that we are all on a slippery slope. We have an election next year and I’m concerned we are going to a medical system similar to England. My politics are pretty liberal but not with health care. I haven’t had issues but it looks like it’s coming my way, too.
So it seems- I follow the US news up here in Canada because all my family is in the US and even we are experiencing changes with both more public and private insurance issues - so we are all worried. I have good doctors but even then, sometimes their hands are tied too.
I think it’s all about the almighty dollar. Scary world.
iodine/levothyroxine
TSH too low and Anaemia?
Long term statins and levothyroxine. 
Antibodies 77 and TSH 8? Ashwaghanda and Iodine started this. 
Supplement, Iodine advice and more
