hey, so, i was diagnosed with hypothyroidism a couple of years ago and have been trundling along on levothyroxine (175mcg right now) and my symptoms just aren't going away, and aren't getting any better. My GP says that because my TSH is within the normal range, my thyroid is functioning fine. But, this doesn't make much sense to me.
I've done a lot of reading about it now, and i've tried to convince my GP to switch me to a T3 drug or at least NDT, but he says that the NHS won't provide those and that my thyroid is fine now, completely ignoring the fact that none of my symptoms have improved. These are my levels as of 2 weeks ago with the labs healthy ranges included
TSH: 3.8 (0.4-4.0)
FT4: 8.1 (9.0-25.0)
FT3: 0.7 (3.5-7.8)
My GP insists that my T3 levels are fine because my TSH is and my FT4 is so close to normal, and that T3 doesn't really matter and doesn't need to be monitored anyway, because the body creates it naturally. But frankly, if our bodies were creating all the things they "create naturally," none of us would have a thyroid disorder!
I've seen people talk about buying T3 online and seriously considered resorting to that, because I'm doing a graduate degree and working at the moment, meaning that my symptoms are ruining everything, and getting in the way of my life. I'm exhausted all the time, no matter how well I eat and how much exercise I get I'm still slowly gaining weight, and my hair is quite literally falling out (though, that's more likely stress from all of this...). But, I don't know if it's really legal to do that, besides, I really cannot afford to be scammed right now and all of these sites seem very dodgy.
Switching GPs isn't an option either, because my son is disabled and having a GP firmly on our side is....well, not worth messing up.
Anyway, any help would be greatly appreciated.
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quinq
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Well, you did make me laugh, 'frankly, if our bodies were creating all the things they "create naturally," none of us would have a thyroid disorder!' Quite right too!!
You are undermedicated is your problem. Most people don't feel well until their TSH is in the region of 1.0 or a little lower. You GP doesn't understand thyroid hormones so you're going to have to educate him. Your body has lots of T3 receptors and if you don't have enough T3 nothing will work well including your heart which cannot convert T4 to T3 and so is dependent on an adequate supply. Ask him how he's going to keep your heart ticking when you run out of T3!!! Not to mention your brain!!
The thyroid ranges are based on normal people who do not have a thyroid condition. They may feel well anywhere within the 'normal' range but people with thyroid conditions in the main do not feel well just anywhere within the 'normal' range. We usually need our FT3 and FT4 in the top quarter of the range which usually means a low. or possibly. suppressed TSH before we feel well.
Some of your symptoms could be attributed to vitamin deficiencies so get your GP to check Vitamin D, folate B12 and ferritin. All are often low with people who have thyroid conditions. When you get the results post them here for best advice.
Nanaedake, the human heart is able to convert T4 to T3 (D2) although it's not clear to what extent. In any event fT4 is low which will only compound the problem.
quinq Well, your GP is a jerk and doesn't know how to treat hypothyroidism. He is a TSH slave and doesn't understand a thing about FT4 and FT3. The aim of a treated hypo patient generally is for TSH to be 1 or below or wherever it needs to be for FT4 and FT3 to be in the upper part of their respective reference ranges when on Levo.
According to the BMA's booklet, "Understanding Thyroid Disorders", many people do not feel well unless their levels are at the bottom of the TSH range or below and at the top of the FT4 range or a little above.
Booklet written by Dr Anthony Toft, past president of the British Thyroid Association and leading endocrinologist. It is published by the British Medical Association for patients. Available from pharmacies and Amazon for about £4.95. It might be worth buying, highlighting the relevant section to show your GP and Endo in support of an increase in Levo.Also -
Dr Toft 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)."
Email louise.roberts@thyroiduk.org for a copy, print it and highlight question 6 to show your GP and endo in support of an increase in Levo.
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TSH: 3.8 (0.4-4.0)
FT4: 8.1 (9.0-25.0)
FT3: 0.7 (3.5-7.8)
To say your results are fine is utterly ridiculous. FT4 is below range and your FT3 virtually non-existent, and it's T3 that is the active hormone that every cell in our bodies need. I don't actually know how you're functioning with a FT3 of 0.7
Exercise uses up T3, and yours isn't being replaced. You should really give up exercise for the moment, save it until you are optimally medicated, because exercising at the moment will only make you worse.
At this stage it's an increase in Levo you need to get your TSH down to 1 or below and then see where your FT4 and FT3 lie. You may end up needing T3 added but you can't know that yet. All the building blocks need to be in place for thyroid hormone to work and to allow conversion to take place. So you need to get the following tested
Vit D
B12
Folate
Ferritin
and Full blood Count and Iron panel if ferritin is low.
All these vitamins and minerals must be optimal (not just in range) for thyroid hormone to work.
You should supplement with selenium l-selenomethionine 200mcg daily as that helps T4 to T3 conversion.
Also, you need thyroid antibodies testing to see if you have autoimmune thyroid disease.
Once you have these results, post them for comment.
Hi Quinq, You certainly appear to be very hypothyroid, based on your symptoms and blood test results. Your fT4 is low and fT3 very low. It's unusual for your fT4 to be low when you are on 175 mcg levothyroxine. Where did you get this blood test done, was it by your GP surgery or a home kit? The numbers are rather unusual, so I'm just ruling out an error. You should take your levothyroxine on an empty stomach and away from coffee, coffee can have a big efffect on levothyroxine absorption. If you don't have time to take your levothyroxine a while before breakfast you may find it mucb easier to take it before bedtime, we tend not to eat or have coffee at bedtime!
You can buy liothyronine (L-T3) and it isn't illegal, although you can't obtain it without a prescription from a UK pharmacy. I would not do this for the moment because your blood test results are quite bad and you need proper investigation. An fT3 of 0.7 is dangerously low and would normally lead to a very high TSH. As your TSH is normal it might be that you have a pituitary problem and this possibility needs to be investigated. The pituitary produces a number of hormones, so just taking T3 might get you by in the short term and mask other hormonal problems.
Are you on a very strict diet? Severe calorie restriction can lower TSH and keep fT3 low. Also stress can do the same but I don't think either would drive fT3 this low. Do you have any eating problems, diarrhoea or take laxatives? What other medications are you taking?
Given your situation with your GP I think the best way forward is to go and see them and tactfully say that your thyroid blood test results are abnormal and you would like them to speak to an endocrinologist about them to see if you need to be referred. You could ask for a referral but you will wait quite a while for an appointment and I think you need treatment now and a quick appointment. Your GP is out of their depth regarding hypothyroidism. If they are not helpful then you need to insist on a referral or even make a complaint if that doesn't work. I know you need to keep them onside but if you don't get expert help soon you will not be able to support your son.
Lastly, this will have a big effect on your studies, you will need to speak to your tutors, explain the situation and point out that your studies will be seriously affected. If you are on good terms with a senior tutor and can see them quickly perhaps they could write a letter for you to take to your GP. This might help get some action.
Increasing your levothyroxine would help a little but it won't get to the bottom of the problem. Assuming the blood test results are accurate your thyroid hormone levels are dangerously low, so you need to be investigated by someone who specialises in hypothyroidism.
thanks so much for the replies, i feel a lot better knowing that my GP actually is just ignorant and this isn't all in my head!
in re your questions Jim: i am on other medication; Nebido which is a testosterone replacement (my body doesnt produce that naturally either...), fluoxetine (SSRI), and as-needed pain killers, because i have a genetic joint condition called Ehlers-Danlos Syndrome. I eat a pretty normal amount, maybe a little too much sometimes, but definitely not an intense diet or anything along those lines.
I didnt know that about exercise using up T3 SeasideSusie so that is great to know, and something i can cut out of my schedule for now lol!
I thought 175mcg was a very high dose of levo already? Doctors I've met seem quite unwilling to prescribe more than 100mcg, nevermind 200+?
Thankfully, my university and college are pretty good about disability and have been accommodating, but I am supposed to be finishing my studies this year and would very much not like to be paying the fees next year!!!!!
I'll speak to my GP about getting more bloods and a consult with an endocrinologist, either him speaking to one or referring me on, and see where we go from there. I wonder if the endo I see for testosterone would know about thyroid conditions as well...I might mention it to her the next time.
I would see your GP or endocrinologist soon. It seems that Nebido can lower TSH ncbi.nlm.nih.gov/pmc/articl... . Although this study shows TSH being halved it may be that Nebido sets an upper limit on TSH. So, in your case your TSH may not be reflecting your thyroid hormone status at all.
I have not read this study yet so I don't know if it explains the mechanism for lowering TSH. I think your best option would be to telephone your endocrinologist, refer to this study and give them your thyroid blood test results and explain the effects on your life. They are responsible for your Nebido prescribing and side effects, they might contact your GP and recommend some liothyronine until they are able to see you. The endocrinologist are in a position to manage your hypothyroidism as well as testosterone status.
Here we go again another Endo/Dr that doses by TSH . I would really look for a new Dr who does not dose with TSH . What ever happened to the rest of the lab markers ? Symptoms that are more telling because it's cellular count at all ? So is it lab results over patients symptoms that counts only ? I guess lab reports look good the patient must feel well too? WRONG !!! We need Dr's that are good listeners and think out of the box who get it . Where are they ? I hope you find soon a great Dr that will do right by you . Hang in there and keep asking about Dr in your area that takes into consideration your symptoms and doesn't dose by labs ONLY .
Are you taking your levo correctly? On an empty stomach, with a large glass of water, one hour before eating or drinking anything other than water; two hours before other medication of supplements; four hours before calcium, iron, vit d or estrogen; six hours before magnesium.
And, when you go for your tests, do you go early in the morning, after having fasted over-night, and leaving 24 hours between your last dose of levo and the blood draw?
All these things, although apparently trivial, can make a huge difference to results.
TSH up the top, T4 below range, and your T3 has taken a vacation! Well below range
How can he call himself a GP
Seriously, you need to go back and educate him sadly as others have said on here. Also lots of people are on more than 200mcgs a day, everyone is different Good luck with it all, hope you get better soon
I'm taking levo at night these days because my mornings are too hectic to wait hours before coffee!! I take it at the same time as my fluoxetine, about 11pm, but i was pretty sure that SSRIs don't interact with levo? if they do that could be a problem, though there's no reason fluoxetine (Prozac, for our US friends) can't be taken in the morning, so I'll switch that up and see if it makes a difference.
I've booked an appointment with my GP for tomorrow, wish me luck folks! Shall update with whatever he says; hopefully, less bullshit....
GPs are at the mercy of endocrinologists. They are give flowcharts to make decisions based on TSH and not even allowed to have fT3 assays. Fortunately many use their common sense but not all. Good luck tomorrow.
So many of us have gone down this path. It boggles my mind that GP's can have a person sitting in front of them, with every hypothyroid symptom in the book and still say: "You're not hypothyroid. Your numbers are fine". ... They will literally ignore their eyes and ears and let you die. I'm serious. I had a good friend who I was certain was extremely hypothyroid and I kept telling her that. She was on the West Coast (California) and I am in the Midwest, (St. Louis) USA. . Nothing I could do as she described to me her many hypothyroid symptoms that ended with her having legs so swollen that the skin would crack open and they put five gallon buckets under her legs to catch the drainage. She died in misery at age 57. .. This in 2000 USA . .. My best advise to you is to find yourself an OLD doctor who uses their eyes and ears and will ignore the damned "numbers"! .. Sorry if I sound angry. ... I am!
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