I am very sad and at a loss now, with no idea what to do? I'd be very grateful for suggestions that will work. I feel as if I have just had a battle with my perfectly decent doctor, I felt like a bully and came away with nothing other than awareness of the flush on my GP's neck and face suggesting she was as upset as I am.
According to Greygoose, who knows a thing or to, my T3 result is too low (bottom of range) and ought to be higher than T4. GP today said not on their lab ranges and that even if it were below the normal range it would still be okay. GP will not trial T3 even though I remain as tired as ever after years on varying doses of Levothyroxine.
GP will not refer to an endocrinologist because my blood tests are "as they should be" and says that in her opinion I do not have any (uncorrected) thyroid issues "you do not present like someone hypothyroid" and the aches, pains, arthritis, etc etc are because I have ME or fibromyalgia. She has said I must pay privately if I want to see an endocrinologist or to have further tests.
I pointed out that although my bloods look right I have the typical "strawberries and cream" complexion of someone hypothyroid (as well as symptoms) but it's a brick wall, so long as TSH is within range my problems are not up for discussion.
She has said I can consult another doctor in the Practice, though she also said none of them prescribe T3 and was surprised when I said I had checked and the Practice is listed as prescribing it. I asked how I would find out which of the doctors it was and she said she didn't know, I would have to find out for myself. Does anyone know how?
What can I do now? Is the only answer to self-medicate with T3 and see what happens?
The trouble is when the message coming back from the GP like today is an unspoken "there's nothing wrong with you" I revert to thinking I am just lazy, bone idle my mother would have said, and I become afraid, really afraid that I'll just do myself harm because there s nothing wrong with me.
Thanks, all, for being 'here' with kindness and understanding, today I really need you and as always really appreciate you.
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thyr01d
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Your doctor will have to experience herself what you have been and are still doing.
They only get half hour training on the wonders of the thyroid gland and it's purpose so I read on this forum last week. Tell your doctor you are sorry she doesn't really understand how unwell you feel and it's due to the training and the awful BTA -guidelines.
If these 'guide lines' were perfect there would not be nearly 40,000 members on this forum many who are now self-prescribing and recovering their health. Some after 20 years or more.
Why aren't patients taken into consideration? - if well they wouldn't even know us as we'd only have a yearly blood test and be carrying on with 'life' and be healthy too.
Thanks Shaws, I especially like your last line, when I have a little more energy I'll incorporate your suggestions into a letter, Marz has sent me a good one as a starter.
Another good suggestion, I'll put this in the letter, face-to-face she just tells me she knows, she studied it at med school and is up-to-date with the most recent research and that all this stuff on the internet is misleading us.
Thanks again Shaws, so very kind of you to help, that's another thing I can put in a letter and thanks too for the link.
I still don't really understand whether my bottom of the range T3 is significant or not or if there is an important ratio between T3 and T4. Can you tell me or point me to an answer please?
I don't know how you find out which GP is prescribing T3 and, if you do, it doesn't mean that the prescribing GP will consider it clinically necessary for you to have it. The GP may be prescribing on the recommendation of an endocrinologist.
Your GP won't refer you to endocrinology, which doesn't guarantee you will be prescribed T3 anyway, so unless you can find a more amenable GP at your practice it looks like you'll have to buy your own T3 online and self medicate to see whether symptoms improve.
You also need to improve your ferritin and vitamin D as low levels cause fatigue and symptoms similar to hypothyroid symptoms.
I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these suggestions.
Thanks Clutter for making sure I know T3 may not be the answer but it's a ray of hope and I'd just like a trial, which is what I asked for. I have been supplementing vitamin D and on prescribed ferrous fumarate since those test results - GP threw that at me today - how lucky I am that she tested T3 and vitamin D - oh dear - I do feel sorry for myself, please just ignore that I'll be better later.
I think you made have made a small error in saying the FT3 should be higher than the T4. Have you looked at the research paper done by a member of this forum - diogenes - explaining in a technical way the issues surrounding thyroid testing. Print it off and send to your GP.
Marz, what Grey Goose said was that FT3 should be higher than FT4 in their respective ranges. So she meant that if FT4 was halfway up the range, FT3 would be slightly higher than halfway up its range if conversion wasn't an issue.
But thyr01d's FT3 was 3.9 in a range that started at 3.8. FT4 was 18.3 in a range that went up to 24. Not much conversion happening there...
There is a template of a letter to the GP when trying to receive treatment for B12 Deficiency. Have a look and see if you could do something similar - substituting the B12 issues with the thyroid ones. Have had a quick look and it looks possible .....
Thanks Marz, this is what I need to hear, it made me cry, because since this mornings consultation I've felt unable to and have resigned myself to waiting for this helpless feeling to pass, in its own time!
Which reminds me of the reading I have ready for one of next week's classes that you might like:
You could ask for a cortisol (adrenals) blood test. Needs to be done at 9am as level changes throughout the day and reference ranges are based on 9am value. If result is below 400 you can push for a referral to an Endo. (Saliva test is apparently better but would need to be done privately and results may not be accepted by GP). Low cortisol can cause the same symptoms as hypothyroidism.
Also have you tried dietary interventions eg Paleo Autoimmune diet? Grain free/dairy free/low sugar diets help many people with inflammatory illnesses. Good luck.
I'm a little reluctant to go off on aother route with the cortisol, but maybe I should, I didn't know the symptoms were the same, wish the GP had suggested that.
Yes, as far as I can with the diet I do but as a vegan it's tricky, because I have no meat, fish or eggs it is difficult to take in sufficient protein without seeds or pulses and grains are a good source of vitamins etc that are sparce in the vegan diet. In my teens I cut out all kinds of sugar other than naturally occuring, am of course dairy free and gluten free and avoid goitrogens - not a lot left, mostly root vegetables, rice milk, hazel and Brazil nuts. Very boring!!!!
Thyr01d, you Don't need to avoid goitrogens unless they upset you. Do you know how many goitrogens there are? It's not just the cabbage family. Walnuts, almonds, pears, strawberries... the list goes on and on. I bet you're eating some of those without even realising they're goitrogens. Your diet must be horribly limited being a vegan, no need to restrict it any more than that.
Greygoose, don't tell me any more!!! I do try to avoid them all because I can't tell whether or not they affect me and for now I'm trying gluten free and am about ready to see what happens if I re-introduce oats. After that I'll try gluten and next some of the goitrogens.
If I starve to death at least I won't have any more arguments with doctors!
Just thought I didn't make it clear that I was joking when I said 'don't tell me any more', I am grateful for all advice and info and you've already helped me a lot - though I do miss the soya.
The results fluctuate because the GPs keep altering the dose! When will they learn how to dose properly?!?
If the accuse you of not taking the medication, offer to take it in front of them, once a week. You can take the whole week's dose in one go, it won't hurt. But if they see you doing it, they won't be so quick to accuse of not taking it, next time!
Hello GreyGoose, I only found out they thought I was not taking the Levo long afterwards, when a new GP came and read part of the notes out loud, so there was no opportunity to suggest taking the meds in front of them - not that they'd even consider that anyway, an appointment a week, good grief!
I am currently thinking of writing a very, very long letter to the GP, when I can find time and energy in between work, and at the moment comforting a daughter whose very good friend from schooldays has just suddenly died.
Forgot to answer, the test for Hashi's was not positive but I think this is what you are remembering, a family friend who has Hashi's and had not-positive results then was found to have it and she is certain I do because of how I am. Of course GP just goes by blood test results - enough to make any patient testy!
I wasn't remembering anything, just asking. But, it just goes to show that one negative result does not rule out Hashi's because antibodies fluctuate.
You say 'the test for Hashi's', but there are actually two. The NHS only does the TPO antibodies, but there are also Tg antibodies. And if the Tg antibodies are positive it means you have Hashi's. Some people have one, some the other, and some have both, but they're all Hashi's. So, you could still have it.
You could also put in writing the disappointment you feel that your chronic illness is not being investigated. Fibromyalgia is not a proper diagnosis, it just means you're suffering from widespread pain. The NHS seems to think that it's enough to give a name to symptoms without investigating the cause.
Yes, Josie, the ME diagnosis was made about 30 years ago, fibromyalgia is new but since I have bony changes from arthritis I think that's probably the cause of the joint pain. I do feel that the GP's aim is to name a cause so that I go away and never return!!!
...also once it is on your notes - they can blame everything onto those names - job done ! No further research required. All the reported causes of ME/Fibro are the same as thyroid it would seem. Dr Peatfield has a chapter in his book - The Thyroid and How to Keep it Healthy. He says Fibro was the word used in the US and CFS/ME in the UK - think I have that right.
Sorry to hear of your treatment by your gp. Is there another surgery near you? Under the new rules you can register with any surgery which maybe worth considering. Are there any local support groups that you could get recommendations of helpful GPS?
Thanks CarpaBobfor the suggestions, there are other surgeries but I don't think the problem is me, I'm very bad at getting people to see how ill I am, it runs in the family, we were brought up not to complain and my little brother died at 13 of kidney failure, the GP a few hours before had diagnosed a pulled back muscle. I just sound aggressive or pathetic when I try to explain and I have the typical 'strawberries and cream' complexion some of the old-school doctors know indicates thyroid but most use to argue how obviously healthy I am and just a hypochondriac.
Yesterday's knock-back has left me feeling hopeless, it will pass but for now I'm not up to fighting on and fear going from surgery to surgery would just go against me.
Try taking drama classes! That will boost your confidence no end, and you'll learn how to talk to people without coming across as aggressive or pathetic.
I know what you mean about the strawberry and cream complexion. One doctor laughed at me when I asked for an iron test. He said, 'you Don't think I'm going to test you for iron with a complexion like that, do you? You obviosuly have plenty of iron.' They are just so ignorant!
Hi Depletedenergy, it's what people being tactful describe as 'lovely rosy cheeks' and light coloured skin (my face never tans and the cheeks are always glowing!). You may have noticed GreyGoose's comment, we are often considered well when we are not. When my father was in an ambulance on the way to hospital the doctors were reassuring my stepmother he was fine "just look at his colour", he was, in fact, having a massive heart attack!
I'd been on levothyroxine for a few years, but continuing to feel so unwell, and getting nowhere fast with my GP or endocrinologist. My test results were relatively good, except that my T3 was ALWAYS bottom of the range. Doctors weren't worried by it, and neither was I until I started reading that low T3 could make you feel ill. And boy, I was feeling so ill, really really grim.
My consultant endo informed me that she wouldn't ever prescribe T3 as it doesn't work <sigh>. My GP said he wouldn't prescribe it as he wasn't allowed to (cost too much), but said that I had nothing to lose by trying it if I chose to self-source.
So I have now bought my own. I took a long time to decide to get any, I was absolutely bricking it. I didn't think I would ever be so disillusioned with my medical care that I would do it. I am only a few weeks into taking T3 now (and still taking levo), and I know that it doesn't work for everyone, but it has been a life-changer for me. Maybe it is something to think about yourself.
Whether or not any of the changes are to do with T3, I have no idea. But ... I am sleeping better, I have less joint pain, less "body vibration" (is like an inner trembling and not a nice sensation), and less pain in my limbs - all of this kicks in again around 6-8 hours after I've taken my T3 (currently taking some twice a day). My general mood is definitely better overall, and the tingling I had in my face has gone.
Previously, if I had a busy day or two (and "busy" meant a trip to the supermarket, a walk around town, or a visit to relatives just for a cup of tea, including a one hour drive to get there), I would have to have a very easy few days afterwards - I was just too tired, too miserable and in too much pain to do much more. I had to space out activities so that I could fumble through life.
I realised that, one day this week, I had had one full day with NO symptoms of anything at all. It was the first time in 6 years that I have had that.
Whether or not my scathing endoknob will acknowledge any of it is of no interest to me any more - if it isn't the T3, then it has been the best darned placebo I have ever had
The only negative is that I have been having palpitations, which I hate, but they have settled down again now. I used to get them badly for a few weeks every time I previously increased my levothyroxine, but they eased off once I got used to the dose I was on.
Thanks Beansmummy, I get that inner vibration too, knew exactly what you meant as soon as I read it, it's very disturbing and seems to coincide with insomnia. I too space out activities very carefully, planning even how to make the fewest walks across the kitchen etc and fumble through life! You're making me smile and I feel hopeful because our symptoms are similar.
According to my endoknob, none of my symptoms are thyroid-related <sigh>
I never ever believed I would start self-medicating, but I wasn't living my life as I felt I should be. I know it doesn't necessarily work for everyone, and maybe it won't always work for me, but I feel happy that things are going OK at the moment. Don't get me wrong, I am not flying like a kite all the time, and my head isn't always in a good place as I do get very low at times but, overall, it has been a good move.
Have you asked for your B12, ferritin, folate and VitD to be tested. They are often low with thyroid problems. Mine were, and I've felt heaps better on B12 jabs.
I've also begun to add T3 to my Levo, on the advice of a private Endo. He wrote to my GP twice asking for them to prescribe it for me. They won't, so I'm sourcing my own from the place I was recommended by someone on this forum.
PS to you Mariliz, if you are anywhere near Gloucestershire/Herefordshire/Worcestershire could I please have the name of the private endocrinologist who suggested T3?
Hi thyr01d, my endocrinologist was based at a private hospital in Sawbridgeworth near the Essex/Herts border. I am in Essex.
He not only looked at the blood test results, but also asked lots of questions about how I felt. I'd paid for the trial of T3, and the costs of buying it in the UK had pretty much doubled by the end of the trial. My main improvements were less constipation, feeling warmer, less tired, ( due to better sleep?), my hair felt more soft and less like "old straw", and my skin wasn't as dry. He also picked up on the blood testing that my VitD was low.
I can send you his name by private message, but I think the travel would be difficult for you?
It was very expensive for the blood testing through his hospital. He has offered to monitor me on the T3 I am now buying.
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