I joined this site a few days ago and have been avidly reading the posts. I am amazed at the level of knowledge that people have and cheered at the thought that I am not going mad after all, or being a hypochondriac, and that my symptoms are due to my Levothyroxine not working for me. I have been on T4 meds for 18 years, 75mcg per day.
Main symptoms are hair loss, so bad that I use keratin flakes to hide the baldness. I have also lost almost all my body hair, pubic the lot! I have intolerance of cold, brittle nails, tiredness, fuzzy thinking, etc etc. Of late my heart has been pounding erratically, so much so that I ended up in A&E, but was told that my heart is fine.
My test results, last taken 3 months ago, are:
TSH 2.38
Free T3 4.4
Free T4 14.8
I have a GP appointment on Thursday. It has taken 3 months to get it as my results are ‘normal’ so the doctor isn't interested. I think I would do better with T3 or NDT as I don’t think I am converting properly. I’ve read about Wilson’s Temperature syndrome and my temperature rarely gets above 36.00.
How can I persuade my doctor to take me seriously? Any suggestions?
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TrishaL
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Can you please add the reference ranges for your results (often in brackets at the side of your result) so that we can see where your FT4 and FT3 lie within their ranges.
On the face of it, your conversion of T4 to T3 is fine, but you need enough Levo to bring your TSH down to around 1 so we can see where your FT4 and FT3 then lie before we know for definite.
Although 37C is said to be normal temperature, in act anything between 36.1-37.2C is classed as normal so at 36C you're not particularly low. I don't remember the last time mine was 37. Lower than "normal" temperature is typical of a hypo patient.
Your FT4 is only half way through range. You need to get your TSH down to around 1, that should increase your FT4 and then we can see how well you convert.
I agree with what Treepie has said below and I think increasing Levo at the moment t is the right thing to do.
Have you had vitamins and minerals tested? Hair loss can be connected with certain low levels.
I'm afraid we need the ranges for those results, to be able to comment. But, one thing is clear : you are under-medicated. The aim of thyroid hormone replacement is to lower the TSH to 1 or under. Unfortunately, not many doctors know that, and - as you said - they are just not interested.
Impossible to say for certain without the ranges, but it doesn't look as if you have a conversion problem. If the ranges are like the ones we usually see, your Frees are balanced, it's just that you don't have enough T4 to convert.
Have you had your vit d, vit B12, folate and ferritin tested? Because some of your symptoms could be due to low nutrients. It's often the case that hypos have low nutrients, due to low stomach acid and difficulties absorbing nutrients. But certainly you do have too many hypo symptoms for someone on thyroid hormone replacement for all those years! Low temperature is also a hypo symptom.
I have no idea how you can get your doctor to take you seriously. But, first, you have to take you seriously, and stop thinking that you are going mad, or that you are a hypochondriac, because neither of those are true! You must believe that you deserve better treatment, and go and jolly well tell your doctor so!
Sadly rather like me myself, 12 years diagnosed hypothyroid but still got symptoms. I kept complaining about pains /exhaustion/weakness and eventually ended up with the diagnosis of exclusion: fibromyalgia. But research largely within the excellent Thyroid Uk website ( and archive of Dr Lowe's q&a s) and forum suggests to me these ongoing symptoms (including the likes of loosing hair, brittle nails, cold/Wilson's syndrome, foggy brain plus ...) are thyroid related. My Gp was onwilling to increase my levothyroxin 100 dose, so I told him I'd already started on 125 and I suggested a new blood test in what would have been 6 weeks. This was only a TSH level test, but it came back in the 'normal' range though a lot lower at 1.27. Noting that the GP wouldn't support any more dose increase I tried lots of protocols recommended on the forum e.g. adjusted time took levothyroxin to middle of the night away from food, caffeine, supplements especially VitD; tried raising the T4 to 137.5 dose to get TSH below 1; and had a full Medichecks Thyroid Ultravit test- and posted results for advice here. Now going down route of getting T3 (20g from abroad thru Forum private message) as my T4 conversion was obviously poor( not obviously your problem, but difficult to tell without ranges). Perhaps you need more T4, and better vitd, B12, folate, ferritin levels. Yes it costs money trying to go it alone, but it is a lot quicker ( considering it's taken you 3 months to get an appointment) even allowing for the 6-8 weeks gaps before able to retest bloods, and you have the instant support of forum members to hold your hand. 'Priceless'
I had a private 'total thyroid screen' 12 years ago showing antibodies :thyroglobulin of 779 (0-40), and peroxidase <10 (0-35). This last week both were 'normal' at 32.3(0-115) and 13.6 (0-34). I haven't asked anybody on the forum 'why the difference?'- after 12 years would antibodies not be so obvious, or on another day would I see the high thyroglobulin levels again? It was only my private test in 2006 that even suggested the Hashimoto's, my GP and endocrinologist were totally uninterested and never advised anything like gluten-free diet etc. If diagnosis only went by my recent test presumably I would not be classed as Hashimoto's , perhaps after 18 years on T4 you would also not have any notable antibodies anyway. What is ANA?
You need an increase in levothyroxine . The aim is to get TSH to about 1 or below and FT4 and FT3 to the upper half of the ranges.You also need the vitamins mentioned by Grey Goose to be optimal for you not just in range .
If it were me, I’d go along to doc Thurs and emphasise how terrible I feel - list symptoms that are obviously thyroid related so doc cannot say it’s something else eg hair loss, cold temperature... I would ask for a trial increase of 25 mcg of levothyroxine and mention that the tsh will almost certainly still be in range. Say you feel this to be a cheap and straightforward way to try and improve your wellbeing.
TrishaL,
Have you been tested for thyroid antibodies and anti-thyroglobuline? The reason you need those tests is because they can tell us if your hypothyroidism is autoimmune in nature. It's called Hashimoto's disease or autoimmune hypothyroidism and it is often said that 90% of all hypothyroid people have Hashimoto's disease. In other words, it's the most common cause of hypothyroidism.
Some claim that the reason you are hypothyroid is irrelevant once on thyroid hormone replacement. I disagree. I have Hashimoto's disease (diagnosed 18 years ago), and an unconventional doctor told me years ago that patients with Hashi's (as it's frequently called) need a suppressed TSH to feel fine. The reason for this, he explained, was because a suppressed TSH keeps the antibody levels down, which in turn lowers the autoimmune attack (when you have Hashi's, your thyroid gland is being constantly attacked by your own immune system; Hashi's is basically your immune system turning against you and attacking one of your own organs instead of bacteria, etc).
I am not 100% gluten free as many recommend Hashi's patients should be. But I have found that a suppressed (<0.01) TSH helps tremendously when it comes to keeping antibody levels down and feeling well. As long as ignorant doctors forced me to have a so called normal TSH (anywhere in range), I felt lousy. As soon as I found a doctor willing to ignore my TSH, and focused more on my free T levels, I started feeling so much better, and that is still the case...!
BTW, a suppressed TSH should be <0.1.
I am getting ahead of myself, because you have not been diagnosed with Hashimoto's disease yet. I just wanted to give you some input and inspiration, mainly to show you that there is always a way to feel better and get well...it may take some time, but you can get there, please never doubt that...!
A TSH of 5 is way too high; it's not above 2 in a person without thyroid disease, more likely close to 1...and, with Hashimoto's disease, you may need it even lower to keep antibody activity down. Not that most doctors understand that; though. Most mainstream doctors want the TSH "anywhere in range", and that's that...but I have noticed feeling much better when my TSH is below 0.
In many labs, a TSH of 5 would be considered out of range as 4 is often the upper normal limit in my experience.
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