Hi, I am wondering if anyone can give me some advice.
I was put on a low dose 50mg of levo thyroxine in November last year, as had 3 consecutive TSH results around 5.00. I have a diagnosis of fibromyalgia. My TSH has dropped to around 0.23, and my GP is wanting to talk to me about this tomorrow. Has the tsh dropped to low? And do you think they will want to take me off the medication? I don’t want to come off it altogether. I feel constantly fatigued, putting on weight, and have had hair fall before going on the meds. Does a 25mg dose exist?
Thanks for your advice.
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Frozenflower
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Yes, there are 25mcg tablets, and you can, of course, cut a 50mcg tablet in half, or take 50mcg alternate days to average 25mcg daily.
What is the reference range for your TSH test, are you below range or just low in range?
And TSH is not the whole picture. You need TSH, FT4 and FT3 tested at the same time to get a full picture. FT4 and FT3 are the thyroid hormones, TSH is a pituitary hormone and most doctors wrongly dose by TSH rather than see where the thyroid hormones lie.
Thank you. They only tested my TSH! I think the reference range is above 0.5 for being on medication. My reading was 0.23. My fT4 and FT3 were about mid range before meditation. Guess I’ll have to have private tests done?
I am on supplements because my Vit D folic and ferritin were all low in November last year.
But - you haven't been fully tested. If you are feeling well on 50mcg - you certainly shouldn't take any less.
You could ask to be referred to an Endocrinologist. Someone - whether GP or Endocrinologist - should test you fully (agree least for the first three sets of tests ).
Ask about the following tests:
FreeT3
Free T4
Total T4
TSH and
Thyroid Antibodies :
TPO & TgAb
Make sure you have all future blood tests early morning and fasting. Omit Levothyroxine till after the test.
Thanks. For replying I can’t see the Gp referring me. I don’t feel well, at all. I was given a fibromyalgia diagnosis 2 years ago. I will have to go for private tests, see what’s going on. My worry is that because I’ve gone below the reference range for TSH they will stop my medication tomorrow. Not sure what to say to GP to avoid being taken off meds!
Did your Rheumatologist diagnose Fibromyalgia? Ask him/her to refer you across to an Endocrinologist or ask them to test the Thyroid Antibodies plus the Frees.
If you haven't already done so, I would apply by email or letter for copies of your hospital records. Make sure to ask for everthing including all blood test results. Then you can see what Antibodies the Rheumatologist tested.
They're free of charge now in UK (since new rules 25/5/18).
Yeah, Think I should. I am presuming the Rheumatologist chest all these things to diagnose fibromyalgia? Would be interesting to find out what my levels were .
In 2008 I had Euthyroid results. No one told me. Neither Colorectal Consultant nor GP (both tested).
17 months later the Rheumatologist noticed them on the computer and retested. His tests came back reported as Euthyroid (ie Normal). He said " Your Thyroid 's OK, you have Fibromyalgia" !
I applied for my records and saw that the "Euthyroid " results were only just in range with top of the range TSH and low in range T4.
Also, the Rheumatologist had tested lots of Antibodies but not Thyroid Antibodies!
Long story short - I asked GP for an Ultrasound scan of my Thyroid; was refered to an Endocrinologist day after scan which had shown Thyroiditis.
Endo ordered lots of blood tests one week before appointment. My TPO result was 300. Can't remember what FT3 was, but results were Hypothyroid.
He also arranged a Short Synacthen Test to check my adrenals first, before I started my Levothyroxine.
My diagnosis? Hashimoto's Autoimmune Thyroiditis and Hypothyroidism.
With Hashimoto's, the regular Thyroid Function blood tests results can fluctuate and fall within the normal range. Mine did.
Thanks so much for your story. I didn’t realise, that you can get normal results, with hasimoto’s. my TPO was normal . I will definitely get my rheumatology records. Good job you persisted.
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also extremely 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).
Is this how you do your tests?
Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or all vitamins
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
Medichecks currently have an offer on until end of May - 20% off
NHS guidelines on Levothyroxine including that most patients need somewhere between 100mcg and 200mcg Levothyroxine. Also what foods to avoid (note recommended to avoid calcium rich foods at least four hours away from Levo)
The aim of Levothyroxine is to increase the dose slowly in 25mcg steps upwards until TSH is under 2 (many need TSH under one) and FT4 in top third of range and FT3 at least half way in range
All four vitamins need to be regularly tested and frequently need supplementing to maintain optimal levels
For most people: 50–100 micrograms once daily, preferably taken at least 30 minutes before breakfast, caffeine-containing liquids (such as coffee or tea), or other drugs.
This should be adjusted in increments of 25–50 micrograms every 3–4 weeks according to response. The usual maintenance dose is 100–200 micrograms once daily.
With Hashimoto's TSH is very unreliable because levels fluctuate so rapidly
Low vitamin levels EXTREMELY common
Hashimoto's affects the gut and leads to low stomach acid and then low vitamin levels
Low vitamin levels affect 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. 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
Ideally ask GP for coeliac blood test first or buy test online for under £20, just to rule it out first
Assuming test is negative you can immediately go on strictly gluten free diet
(If test is positive you will need to remain on high gluten diet until endoscopy, maximum 6 weeks wait officially)
Trying gluten free diet for 3-6 months. If no noticeable improvement then reintroduce gluten and see if symptoms get worse
I am not sure if i have hasimoto’s, a test i did through medi checks back in November showed normal antibodies. Mid range FT4 & FT3, tsh at 5.7, and low vitamins etc. After being on levo for 6 months tsh now 0.2. My gut is terrible, bloated and painful. I have pain all over, and profound fatigue. Just at a loos with it all. Thanks for all the info.
Just to let you know. My TSH at last test was 0.005. Doctors panic, want my levo reduced, but when they test my T3, entirely normal (5.8) I feel well and refuse to drop my levo dose of 175mcg daily.
Yes there is a 25mgms dose which is usual to start off with. You do sound as if the symptoms need looking at more fully and a full blood count taken on all factors leading to hypothyroidism. Could be an adrenal problem or pituitary if the TSH is so low. Yes a functional medical practitioner would be most helpful with all possible tests too(Geneva labs) but such a route would set you back a couple of thousand £’s. Your GP might yet prove to be more helpful. Take heart dear frozen flower. You will get the help you need ASAP. Keep looking on these pages. I have found the info here mega useful.
Full thyroid plus vitamins and antibodies say £79-£100
Adrenals dhea and 4 cortisol £79.
Comprehensive stool analysis £200 ish.
A mitochondrial function test is the most expensive and I only know of one specialist who does it. Circa £250.
Please don’t give up. I’ve been here myself. Please do read drmyhill.co.uk and in the search engine on the home page type in orchestra. It’s the best all round article I’ve read on how to improve your health. It covers ME and in the correct order what to address first.
Diet
Vitamins
Absorption
Then thyroid and adrenal meds.
Slowdragon covers many of those aspects.
Do I think they will discuss a potential reduction? Possibly yes. However stick to your guns.
I am v surprised your t4 was not tested as a low tsh should trigger the nhs test.
At the moment you are light years away from being well. In the worst case situation you fund your tests and your meds until you have more info.
I’ll place a bet that you have low vitamins and or low t3.
Also with fibromyalgia you should be gluten and sugar free.
Hi I am curious that your doctor saw 50mcg as a starting low dose though I guess it depends on how low your T4 and T3 were.my Tsh was 5 and my T3 low even though t4 was just normal .. my gp out me on a 25mcg does to start and said I should have my bloods monitored before increasing it
I think it’s a bit trial and error to start with so most important thing is to talk to gP or someone who really understands theses things. Did your gp test for antibodies because that might also explain some issues in which case diet can help with weight gain etc
My gp also put me on gluten free which has actually transformed how well I feel
My consultant basically said if you're hypothyroid and your tsh is above zero you aren't being medicated properly. The range between hypo and hyper is massive so the ranges are massively over cautious.
I also say to my gp they need to treat the symptoms and refer if they aren't comfortable doing that. So far it's worked fine.
Your GP can request B12. Folate, Ferritin, D3, and I think F T4 maybe even FT3, but at least the others so making much cheaper for what you need to request privately. You can order online Reverse T3 while you are doing so.
Hi, thanks. I appreciate your reply. I asked my Gp if they would test my FT4 this morning, but she said they don’t do them!! It’s so difficult trying to get anywhere with it.
Oh well worth asking. The other non thyroid tests you mentioned I have through GP request. I have just looked up my tests 2017 Blue Horizon. I had TSH, T4 total, Free T4, Free T3, TPO abs, TG abs but I wish I had, had Reverse T3
While doing so I had B12 total but also B12 active (holo) which NHS don't do
I also had a medichecks - they will do a full blood draw at certain hospital phlebothamy depts for £25 (still give you back to post). One happens to be our local hospital. My friend couldn't fill the finger prick phile and so medichecks charged £25 to have drawn at the hosp. My friend said the hospital nurse was happy to draw as the hospital knew being paid by the co. x
Tell them before they take you off you want a t4 amd t3 test done .if not go to medichecks if in the uk, also tell them you want antibodies done as you would want to make dietary changes if it was autoimmune. if not get all these done. Ask for vitamin tests also and if i was you i would take vit d3 supplement good quality supplemt like solgar. If you have autoimmune i.e hashimotos you shoiuld not be eating any gluten at all as it exasoperated the condition.
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