I was hopeful of a referral from my GP at my last visit in June but I failed to persuade her so I want to do better this time. I have posted various bits of my history at different times but if you can bear with me I'll summarise now.
I was diagnosed as hypo about 7 years ago and was doing OK on 150mg of Levo until last autumn. I started to feel worse so asked for a thyroid blood test in March. It turned out that i had changed from hypo to hyper (TSH 0.137 (0.3 - 5.0) and FT4 25.3 (11-23)) so my dose was reduced to 125 even though I still thought I had symptoms. I was tested again in May and was told that the lowering of the dose hadn't worked yet (TSH 0.09 and FT4 23.2) so I carried on taking 125mg
I was retested in June and results were even more hyper (TSH 0.03 and FT4 24.8) so my dose was reduced to 100mg. I tried to argue that I still felt rough and asked about referral and/or T3. I was told that nothing could be done until my TSH was closer to the range. I have had another blood test today and am due to see my doctor next week.
I have also had FT3 tested via Blue Horizon.
24/5/13
TSH 0.07(0.27 - 4.2)
FT4 23.6 (12-22)
FT3 5 (3.1-6.8)
18/7/13
TSH 0.173 (0.27 - 4.2)
FT4 22.1 (12-22)
FT3 4.3 (3.1 -6.8)
I have also had Vits etc checked and have decided to take B12 supp since I was under 500.
If you are still with me these are my questions-
Can you be hyper if your FT3 is mid to low?
Do you thing the fact that I can't lose weight, feel tired and am losing my brain could be due to something other than thyroid problems?
and most important
what should I say to my doctor next week?
I am so sorry that this is so long winded but I really want to get it right this time. I have been struggling at work for the last six months and really need something to change.
Many thanks in advance for any advice or insight.
Written by
JennyC2
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No you are not hyper, your FT3, which if above the range is the definer of a hyperthyroid state. is only at 4.3., 1.2 above the bottom of its range, and 2.6 below the upper limit of the range. Your FT3 is therefore low, no wonder you feel rough.
I suggest that you buy Dr Anthony Toft's little book "Understanding Thyroid disorders". It is a BMA publication and Dr Toft is a past president of the British Thyroid Association so your doctor would be very foolhardy to argue with such an authority. The book is available from Amazon or chemists for about £5.
On Page 88 there is a paragraph headed: Judging the correct dose of thyroxine.
"Typical results would be a FT4 of 24 p/mol or TT4 of 140nmol/l and a TSh of 0.2mU/l. In some patients a sense of well being is achieved only when FT4 or TT4 is raised, for example 30pmol/l or 170nmol/l, and TSH low or undetectable. In this circumstance, it is essential that the T3 level in the blood is unequivocally normal in order to avoid hyperthyroidism."
Bear in mind when reading/using this that Dr Toft is using his typical reference ranges as given on P 87.and when he says "unequivocally normal" he means the FT3 must be within its range, whatever that range is.
I hope that the information in this book persuades your doctor that your dose needs raising, and he might take note of Dr Toft's red panel also on P 88.
Many thanks for this and the additional info below. I can't tell you how good it feels for someone to understand. I had started to think that the doctor was right in thinking the cause might be depression. I think I probably am depressed but it is a symptom rather than a cause.
I was thinking of asking for T3 to be prescribed with T4. Does that sound right to you?
Ps I have dr Toft's book and will certainly take it with me.
Dr Toft's book has reference to the use of T3 in addition to T4 when some patients do not feel as well as they might even with some extra levothyroxine. See PP 46-47.
As your levothyroxine reduction led to the deterioration in your condition it would seem tactful to first deal with that issue with the help of P88 as indicated. Once the levothyroxine is restored to its previous dose, 150mcg daily where you previously felt well, carefully monitor your condition while the restored dose is taking effect, normally it takes at least 5/6 weeks for maximum effect be achieved so give it time as progress varies from person to person. Private testing for FT3 will probably be necessary as few GPs request it, and even if they do, labs can refuse to test it if the TSH is in the reference range.
RedApple's (thanks, RA) direction to the extensive hypo symptom list will help in monitoring symptoms.
If you then feel that the addition of some T3 would be beneficial that might be the time to bring up this issue and you would have had time to research and develop your case if you still feel additional T3 would be useful.
Your B12 test will have been the NHS serum test. This only indicates the amount of B12 in the blood, but not specifically the Active B12 the cells are using. Blue Horizon does Active B12 tests around £67, myrios.co.uk does serum B12 and folate for £30, but note it is serum B12. If more used to ng/l rather than Myrios pmol/l convert pmol/l to ng/l by dividing pmol/l by 0.738. Along with the B12 supplements you really should take folic acid which is a methylator of B12, about 800 units daily with the B12. More info in my posts and those of Hampster1.
I had to resort to DIY methods re raising B12 as GP from hell preferred to shout at me and refuse to treat. Old story. You can use this link for info regarding DIY raising B12. I have a few posts in there, just keep going!
Thanks. My problem was that I did not feel well on 150. What do you think my chances are of getting agreement to go above my previous dose? I was thinking, rather simplistically that the Blue Horizon test shows that T4 is ok but t3 isn't I could just add the missing bit? Does it not work like that? Jx
You were doing OK on 150 until last autumn, then you felt symptoms again and the response by the doctor was to decrease your dose. It seems to me that the situation Shaws has provided a link to was operating and is operating right now. You have felt progressively worse and still GP stubbornly, and incorrectly, keeps reducing your dose, worsening your health. Her job is to improve your health but your dose is now at 100mcg, down from 150mcg and even at 150 you had begun to feel rough. Point out to this doctor that you are now on only 2/3 of your previous dose, and the only result is you are getting worse under her (incorrect) management, that your TSH has nothing to do with being or not being hyperthyroid, that DrToft clearly states it is the T3 shows this. Show her P88 or better still leave her a photocopy of it to back up this assertion. Her treatment is tantamount to malpractice/medical negligence for she does not have a clue, is making you worse not better and in my opinion you are entitled to insist on a referral to an endocrinologist as you cannot go on declining in health and you need somebody who knows what they are doing, how to assess you, and add T3 if necessary.
GPs do not have to record all verbal exchanges but if you take a written list of your symptoms and require specifically that this list goes on your file then that is what they have to do: I have done just that with no objection raised. You will then have on file your own declaration of extant symptoms. Date it and state your dosages, present and past.
Many thanks. I think that I am going to spend some time this weekend putting some stuff together to show the doctor. This and the advice I have received will give me the confidence to get a result.
PS! If you have not already done so, visit the main site for loads of valuable info. The symptoms you list are those associated with hypothyroidism but you will recognise many more from their symptom list among other information
PS again - what to say to your doctor? Take Dr Toft's book in with you, that page speaks for you, your GP cannot do anything other than read that page, he positively cannot argue with such an authority.
Dr Lowe said that Endos or doctors have no scientific evidence for adjusting thyroid gland hormones due to the TSH blood test. Cursor to question dated January 25, 2002.He also said:-
1. And adjusting the thyroid hormone dose by the TSH level gets most patients in trouble—almost always because their tissue metabolism is so slow that they are sick.
2.When the typical patient’s T4 dose becomes just high enough to produce enough T3 in the pituitary to suppresses the TSH, T3 production in other tissues will be inadequate to keep their metabolism normal. As a result, the person's tissue metabolism will be slow, and she'll suffer from symptoms of too little thyroid hormone regulation. The net effect of all this is that the TSH is effectively suppressed by a T4 dose that is inadequate for keeping the metabolism of other tissues normal.[1,p.990]
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