Hopefully I am doing this right... have never posted anything anywhere before now... just desperately need advice...
I'm 43 and have an underactive thyroid- was diagnosed I'm guessing around 10 years ago. I take 375 levothyroxine.
I feel tired all the time and get muddled / forgetful re: words and names at times at work. I have no energy, small amounts of exercise wipes me out and I am regularly falling asleep in the evenings. I have always had dry skin and although I have enough hair to cover scalp, I have lost loads. In a ponytail I can easily wrap my little finger round, 10 years ago just getting thumb and first finger would have been a great struggle.
I have seen the GP on numerous occasions in the last 6 months. They have put me on folic acid, diagnosed type 2 diabetes, put me on metformin and recently cholesterol medication.
A couple of months ago, I explained to GP that I am not coping. They did blood test and said that my thyroid was very low and they were referring me to hospital thyroid dept. Next appointment (and with no new blood test) they said hospital confirmed by upping levothyroxine to 375 from 350, hospital did not need to see me and all ok!
I was feeling so weak / ill at this point I took week off work (sick leave is very rare for me), but had no choice (for instance, a few days before a Manager drove me home from work a conference as felt so weak was struggling not to fall asleep). I also had to cancel a planned work visit as could not make the short walk uphill. Now I am a large / obese person and definitely not fit, but seriously this walk is something a few months back I could have easily done.
A returned to GP and asked to speak to a different doctor, I explained I have lost a stone in the month before (trying anything to not feel like death). They were really kind and did tests. I got the results and they explained I feel rough due to lack of vitamin D and gave me a prescription. They advised thyroid is fine.
To be honest, I do not feel fine and need help. My last thyroid results were Serum TSH 0.01. Serum free T4 34.5. I don't know what this means apart from GP says it is normal.
Does anyone have any ideas?
Written by
Dhart
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A free T4 level of 34. 5 doesn't seem normal at all. Do you have reference ranges for those tests?
We really need to see test results for everything you have had tested, with their reference ranges. If you don't have them then ask at your surgery's reception for a print out, it's our legal right in the UK to have our test results. Don't accept hand written or verbal results, make sure you get a print out with the reference ranges included eg
TSH: 0.01 (0.2-4.2)
To get a full picture ideally we need to see
TSH
FT3
Thyroid antibodies
Vit D - post your result and say what has been prescribed
B12
Folate
Ferritin
Something is obviously wrong and we should be able to get a clue from your results, I'm sure it's more than just low Vit D.
Vit D is severely deficient. Have you been given loading doses totalling 300,000iu over a period of a few weeks?
After loading doses you need retesting and then take a suitable dose to get your level up to that recommended by the Vit D Council which is 100-150nmol nmol/L. Your GP may only provide 800iu on prescription, or may tell you to buy your own. Come back with your new level and I will suggest what dose you need.
Your GP wont know, because they're not taught nutrition, but there are important cofactors needed when taking D3.
D3 aids absorption of calcium from food and K2-mk7 directs the calcium to bones and teeth where it is needed and away from arteries and soft tissue where it can be deposited and cause problems.
D3 and K2 are fat soluble so should be taken with the fattiest meal of the, four hours away from thyroid meds.
Magnesium comes in different forms, check to see which would suit you best and as it's calming it's best taken in the evening, four hours away from thyroid meds
You should ask your GP to test for B12 deficiency and pernicious anemia. With your level you may need B12 injections.
Ferritin is too low. For thyroid hormone to work it needs to be at least 70, preferably half way through range. You an help raise your level by eating liver regularly, maximum 200g per week, and other iron rich foods.
With such a high FT4 you need to find out if you are converting T4 to T3 so you need FT3 testing at the same time as FT4. Ask your GP to request this, however the lab may not do it. Your GP really should override the lab's decision if this is the case, or you may have to pay for private tests with one of our recommended labs.
You also need Thyroid antibodies tested to see if you have autoimmune thyroid disease. Again, if your GP can't get them done, you my need to do them privately. We can suggest which test bundle is best value for the tests you need if you do need to do private tests, and which lab to use.
I have some symptons listed for B12, but there are quite a few symptoms I don't have. I have had aches for ages, but not too much too worry about. Depression, weakness, forgetfulness and blurred vision / eye aches are main things.
Forgot to mention, I was also diagnosed pcos in the past.
My thyroid symptoms started in late teens / early 20's. I went to gp as tired, skin was dry, gaining weight for no reason and periods had practically stopped. They said all was fine. Only found out about thyroid and pcos when in my early 30's I had one off case of gall stones and they did blood tests.
In regards to medications I am currently taking:
Colecalciferol 800unit capsules
Once a day
Levothyroxine sodium 375microgram tablets
Each morning
Been on over 300 for many years / as long as I can remember
Atorvastatin 20mg tablets
One at night
Folic acid 5mg tablets
One daily for life to replace vitamin
Just about to stop metformin and change to
Sukkarto SR 500mg tablets
4 tablets daily as tolerated
In regards to the diabetes, I've been tested before and only recently developed this.
800 IU daily Vitamin D is not enough. That is the LOWEST daily maintenance dose which is started AFTER the initial Loading dose has been taken which can be as much as 300,000 IU , taken in split doses over six weeks.
Dhart , you have multiple issues here - there’s nothing normal about these results and your doctor apparently doesn’t have much of a clue...
How much Vit D were you prescribed?
Your B12 level is very low - you may well have pernicious anaemia which is quite possibly the cause of your symptoms - didn’t your doctor say anything about it? You probably need B12 jabs. I’d go back to the doctor and ask for that to be considered as a priority.
And your ferritin level is much too low but it would best to get a full iron profile done before supplementing with iron tablets.
I don't agree that it is ' probably all your fault". You need (as we all do) appropriate investigations and full diagnosis. Keep asking GPs for tests : Thyroid Antibodies (TPO and Tg) and FT3 ; iron & Pernicious Anemia tests.
You could ask for a referal to Haematology, re the iron and Pernicious Anemia investigations but as the Endocrinologist referal came to nothing not sure if you'd get it. However, someone in the NHS should investigate, diagnose and treat you.
What dose of Vitamin D supplement (colecalciferol) were you prescribed? With a result of 16 (deficient) as the note says, you should have been prescribed Loading dose.
With such a low Viamin B12 level, I would be asking for testing to eliminate Pernicious Anemia.
Wondering if you should be on less Levothyroxine and the correct supplements to bring your nutrients levels up?
Have you had any tests to check your Adrenal function?
FT4 of 34 sounds over treated. Though without the ranges it's not possible to say for definite
Usually range for FT4 is about 12-22.
You are possibly on too much Levo. 375 is a high dose.
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. They can make nominal charge for printing but many will do so for free (£10 max and can not charge at all after May 25th 2018 due to new EU ruling)
You need to know TSH, FT3 and FT4, plus have you also had thyroid antibodies tested
Also helpful if had vitamin D, folate, ferritin and B12 tested.
Low vitamins are extremely common. You say you are currently being treated for low vitamin D
How low was it? How much are you currently prescribed
You are also taking folic acid so have low folate too. Is that daily? Or weekly and has it been retested
Essential to know if you have high thyroid antibodies, this gives cause of hypothyroidism as Hashimoto's also called autoimmune thyroid disease
So full Thyroid evaluation you need TSH, FT4, TT4, FT3 plus TPO and TG thyroid antibodies. Plus vitamin D, folate, ferritin and B12.
Essential to test thyroid antibodies, FT3 and FT4, plus vitamins
Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies
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.
All thyroid tests should ideally be done as early as possible in morning and fasting. When on Levothyroxine, don't take in the 24 hours prior to test, delay and take straight after. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)
About 90% of all hypothyroidism in Uk is due to Hashimoto's. Low vitamins are especially common with Hashimoto's. Food intolerances too, especially gluten. So it's very important to get antibodies tested.
With Hashimoto's and/or low vitamins we can be poor converters of FT4 to FT3.
High cholesterol may be symptom of still being hypothyroid
I have been on over 300 levothyroxine for years / as long as I can remember.
It is interesting you think I may be on too much. I always take my pills without fail. A few months ago the gp questioned me as to whether I was actually taking my pills as blood test / results said thyroid was extremely low, hence they referred me to hospital and upped meds from 350 to 375.
Never got hospital appointment though, as in next gp appointment they said hospital advised not accepting referral as thyroid fine with new higher dose. Interesting as no new blood test was done.
Asked to see a different gp and they did new blood test, which gave this higher result.
Will look into blood test results and getting private tests done for FT3 etc as I get impression gp thinks all is normal now and was down to lack of vitimin d and being overweight / obese.
You are taking a very large dose of levothyroxine if that is your daily dose. It's possible that if you are very, very large you may need that amount but if not then it's very likely that you have absorption problems. The poor absorption of levothyroxine could be caused by a number of different things like gut dysfunction, coeliac disease, B12 anaemia and so on.
I think you should return to your doctor and insist they run more tests. Your FT4 level sounds too high although it depends on your lab's ranges. I don't think diabetes alone would cause a lack of absorption of levothyroxine. I don't think your hospital have been helpful. In fact they may be overdosing you.
You could also try a different formula of levothyroxine as you might be intolerant to the one you are taking. Check which type you have been given.
At the traditional dose per kilogram, Dhart would have to be about 235 kilograms (37 stones) to require a dose of 375 micrograms! (Apparently the heaviest UK woman was 48 stone - so not impossible but seems unlikely.)
That is pretty massively over-range. Levels like that are more often seen in hyperthyroidism or, occasionally, acute major overdose, than in someone prescribed and taking a controlled dose. That it was recently increased is absolutely defying any sense whatsoever. It is dangerous.
If there were no Free T4 test result, we could - just about - suggest a mistake. But to go past a highlighted statement simply resoundingly shouts malpractice. (I suppose Dhart could have mistyped or something but the Outside reference range is pretty clear.)
In that case my doctor seriously overdosed me too when switching from TEVA to Eltroxine, my FT4 rocketed to 34.0 and was so sick. Never properly recovered from it. Perhaps Dhart needs to knock the dose down quickly??
Ashamed to say I weight 19 stone. Although I really do not eat the really huge amounts (like you hear about when people who lose weight / talk about what they used to eat). I do eat way too much though. I have lost 2 stone in last few months and still trying to lose more.
One problem is that I know my body ideally runs on very few calories / less than most people and I eat too much. However, the biggest problem with losing weight is the exercise thing. I have never been 'fit' and I have been large for a very long time. I used to manage well, but in last few months I literally have no energy at all, just tired all the time.
I know gp feels this is all my own fault and probably is, but think I will try and get some private tests done.
Unfortunately gp referred me to hospital as thyroid results were really low (despite being on 350), but even though no new blood test was taken they advised they did not need to see me as I was now on 375.
I just replied to someone on this site as the overdosing is interesting. Previous test a few months back on 350 was so low they questioned whether I was even taking my pills (which I was).
I had had tummy problems / ibs type symptoms for years, however being overweight / obese this is my fault. So have not mentioned to gp.
I think gp thinks all is fine, so will try and save get private tests.
Two possible solutions to the enigma a) you are not converting that levo (storage hormone) to the active hormone T3 b) you have Hashi's and have just had a Hashi's 'hyper' flare. But, we won't know anything for sure without seeing your FT3 and TPO/Tg antibodies. I feel the answer lies there. If your doctor won't test them, would you be able to test them privately?
With a TSH of <0.01 it seems that something is making the pituitary think there is enough thyroid hormone! (Or the pituitary is not making the TSH is needs to.)
If the TSH was low due to impaired pituitary activity, then the FT4 would be low, not high, no?
If it is a Hashi's flare then the FT3 will also be high. But, with such a high FT4, it is possible that the FT3 is over-range - with or without poor conversion, if it exists - and it's a simple case of over-medicating.
I think everyone here is concerned that you have no idea as to Free T3 level.
If you do get tested, we suggest having the blood drawn as early as possible - e.g. 08:00. Usually, TSH is highest in the very early hours and drops all through the day. This might not be very important when your TSH is absolutely rock bottom, but probably best to have all tests at that time so that you are, as far as possible, making the results comparable into the future.
Also, many suggest fasting (no breakfast) - but you have to be led by your blood sugar on that.
That is a very good idea. You absolutely need to know your FT3 because that is key to the whole problem. It is so rediculous that the NHS will no-longer test it, bu their understanding of thyroid is so limited that it's not really surprising. But, we know better. So, get your results and post them on here, with the ranges, and then we'll have a clearer idea what's happening.
Before coming on this site, I had not heard of things like FT3, but now plan to get FT3 etc tested a.s.a.p. Thanks to the people on this site, I think I now know where to get them- thank you
I wonder if you’re converting T4 to T3 There is no range or result for fT3 is there? Perhaps you are boosting T4 to such a high level because you have insufficient fT3. Need fT3 tested too.
Dhart, I am sympathetic to your needs being hypothyroid, diabetic and diagnosed with fibromyalgia myself, I have many of the same problems. Unfortunately the diabetic diagnosis tends to top all your other needs( at least in my experience at my GPs)... you'll be told it's your high blood sugar that makes you feel tired etc. Make sure you get a blood sugar monitor so you can at least check this and learn how what you eat /drink ( in what combinations) and when , makes sugar levels high or low. Metformin incidentally depletes B12. I have rather given up on my GPS re thyroid problems and have taken a proactive route. Try tackling the low Vit D and B12 levels : you can get quality high dose supplements of both of these ( eg 10,000 IU Vit D instead of the 3,200 suggested in the test result). But also add VitK2(mark7) to help the Vit D go to bones and teeth where needed. I am not surprised you feel so bad with such a high dose of levothyroxin. Are you able to get your T3 tested too ( you might have to go private, but firms like Medichecks will test T4,T3, TSH, and Vit D, B12, folate and ferritin plus antibodies) as indicated by Seaside Susie? You might not be converting the T4 to adequate T3, or/and as Nanaedake suggests your gut may not be absorbing correctly. Try searching this Thyroid Uk website you'll glean lots of information and confidence to try to control your problems better than most medical help unfortunately.
Thank you- just so happy that I found the Thyroid Uk site... before this felt very isolated, like it was all in my mind. Just so nice to hear from people who understand!!!
You need to know what your levels of Free T3 are. Also whether thyroid antibodies are raised. If they are raised then you have Hashimoto's Thyroiditis and not Hypothyroidism.
This is a link to thyroid blood test from Medichecks, a private blood testing service. It would give you results for TSH, Free T4, TT4 (total T4), Free T3 which is vital to know, plus TGAb and TPOAb which are the two thyroid antibodies.
Currently you don't really have adequate information from the few blood tests your doctor has carried out, but that is very common.
To me (but I am not medically trained) it is looking like your body is not converting that vast amount of T4 being put into it daily into the usable thyroid hormone T3. Your Free T3 blood results will give more indication,.
And for thyroid antibodies tested. If antibodies are high then you have autoimmune thyroid disease also called Hashimoto's
Ask for coeliac blood test too. If test is positive you will need to stay eating gluten until endoscopy to confirm. If negative then you can try changing to Strictly gluten free diet anyway. High percentage with Hashimoto's (and PCOS patients) find it essential. Don't expect GP to know any of this
Insist on Thyroid tests being re done, your FT4 is EXTREMELY over range, you are either on too large a dose or had a Hashimoto's flare, when your own thyroid dumps a load of thyroid hormones temporarily
If you are over medicated you will need to lower dose slowly. Normally we say only 25mcg reduction at a time, waiting a few weeks. Come back with new test results when you get them.
It's highly likely you do have Hashimoto's as you have PCOS. They are commonly found together.
I hardly ever reply but this is something I have experienced. Years of feeling symptoms of hypo and Doctors putting thyroxine up till I was on very high dosage. 3 years ago I discovered my vit d was low but not as low as yours and gp put me on recommended nhs dose. 2 years later I still felt the same and had private blood tests which also said my b12 was in range but low and vit d had hardly risen despite supplementation. It’s a long story but main bit is upped vit d to 10000 a day and took 1000 vit b plus b complex to balance the b vitamins........after a short while I started feeling much improved and hair stopped falling out, aching stopped, depression went and I manage to stay awake all day. Don’t underestimate (like I did) the importance of keeping these vitamins to there optimum levels, after 40 years of gps altering my thyroxine dose every time I complained of symptoms and not getting relief. I feel better than I ever have. Unfortunately Doctors are trained to use expensive potions from pharmaceutical companies and as vitamins are bought over counter they have very little understanding for them. We also believe Doctors know everything. But they are trained to treat the individual symptom and not holistically. My advice is if it’s not working so think out of the box and don’t assume as gps do that your symptoms are all thyroid related.
Thank you so much for taking the time to reply to me. What you said makes a lot of sense- definitely taking the vitamin results more seriously and plan to be more proactive in addressing my health instead if relying on GP.
I discovered on getting online access to my old blood tests I had had severe vitamin D deficiency for years - was never told by GP or treated
Only through this forum did I learn the importance of full testing of TSH, FT3 and FT4 plus Vitamins
Long story short .....despite no gut symptoms, like many I turned out to be severe gluten intolerance (not coeliac) and multiple vitamin deficiencies- more on my profile. No medic ever suggested gut was involved
Most, if not all hypos have gut issues
We see 100’s turn up on here been on inadequate vitamin D dose from GP for years and remain still deficient
Your are likely to need a high dose vitamin D to improve levels and ongoing maintenance dose once level reaches around 100nmol
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