Hello, I was wondering if anybody could recommend an NHS doctor or private doctor/endocrinologist that prescribes T3 as I am really struggling with severe depression, excessive tiredness, a lot of hair loss, constipation etc.I was diagnosed with sub clinical hypothroidism 2 years ago and prescribed 25mg of levothyroxine. It did bring my TSH down but I was still experiencing symptoms. I had a total hysterectomy for PMDD 3 months ago and after that my TSH rose to 4.02 and I have had to alter my HRT as I have been feeling even worse. I currently take sodium valproate as a mood stabiliser, venlafaxine as an antidepressant and fenofibrate for cholesterol. My last blood test was
FT4 12.2. (9-23)
TSH 1.97. ( 0.3-4.2)
B12 617. (190-910)
Serum folate. 13.1 (3.3-9999)
(I did take my multi vit& mineral supplement before blood test)
I have also noticed that on every blood test I have had done my Haematocrit level is always at the very bottom of the range and so is my serum alkaline phosphatase & my EGFR is always 78 which I think is a bit low.
I am going to have my FT3 and thyroid antibodies tested privately as my doctor refuses to test them or raise my levothyroxine even though I told her I am really suffering. So I would really appreciate it if anyone could help with my results and let me know of a good NHS preferably or private doctor that would prescribe me T3 for my symptoms because I have been ill for the last 25 years and I feel like giving up because I think I have a problem converting t4 to t3 or the medication I am taking is causing or adding to my problems. Also would selenium help me at all and how much should I take?
many thanks in advance.
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Hawkwind
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25 mcg is not much of a dose at all. Your fT4 is low. Can you get a referal to an endocrinologist? No one is on such a low dose. That's totally ridiculous, like placebo therapy, almost.
Thank you very much for replying, I really appreciate it. My GP said I am only subclinically hypothyroid & she says that my symptoms are not because of it but I disagree because it doesn't matter how many different antidepressants I take, they never work. And I have no energy at all!
I will try and get a referral to an endocrinologist but I think I may have to pay privately because I have little hope that she will refer me.
Hawkwind, it may be worth seeing whether there is a more empathetic GP at your surgery. There is room for a dose increase as most people are comfortable with TSH 1.0 or lower, with FT4 higher in range. Read Treatment Options in thyroiduk.org.uk/tuk/about_... Email louise.warvill@thyroiduk.org.uk for a copy of the Pulse article if you would like to show it to your GP.
You'll need a FT3 result to determine whether you are a poor converter which is indicated by low TSH, high FT4 and low FT3. At the moment I suspect you are undermedicated.
Email Louise for a copy of the member recommended list of private GPs, NHS and private endos. If you see someone privately check with their office whether or not they prescribe T3 before confirming. Not all NHS CCGs permit prescribing of T3.
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.
Clutter, thank you so much for replying I really appreciate it. The last time I saw my GP I mentioned that it said on the thyroid UK website that a lot of people are most comfortable with their TSH 1.0 or lower & the FT4 higher in range but she said that that is only for people that are hypothyroid and not sub clinical hypothyroid like myself. Is this correct?
My first TSH reading was 7.8 and I think the second one was 5.8 and it was actually a gynaecologist that prescribed the 25mg of levothyroxine for me.
Unfortunately because I have suffered with PMDD and depression for so long I think my GP is putting everything down to that. When I asked her to increase my medication she refused saying that the problems that I am having are not down to my thyroid but I think there is a good possibility they are, because it doesn't matter what antidepressant they give me I never feel any better.
I will try to see a more empathetic GP at my practice, but I doubt I will, because I find that when one says no then the rest follow suit unfortunately. I will Email Louise Warvill for a copy of the pulse article and the list of private & NHS GP's and Endo's.
Thank you so much for all your help, you are very kind.
Hi Hawkwind, that was a dismal read. Every one of your symptoms are hypo symptoms. Why did they not raise your dose of hormone when your TSH rose again?
Depression -due to lack of serotonin
Raised cholesterol -due to the fact your adrenals need it to make up female hormones, cortisol and important steroids.
Your medications have now ALL interfered with that and placed more stress on them.
I feel so sorry that these doctors do not understand any of this. They should but I suppose they can't because it isn't part of the curriculum at medical school.
I don't know for certain but even the hysterectomy may have been avoidable.
I'm not usually an alarmist but I feel after reading posts here for almost three years, this situation of thyroid treatment is tantamount to malpractice. It's not just the UK. I have friends in the U.S. who are also on Levo, have difficulty in getting NDT and are not in good shape.
I hesitate to tell you to stop the pharmaceuticals as I am not a physician but I doubt that even if they are temporarily helping you, in the long run I think they are harmful.
There are some videos I have posted in this thread I hope you can view.
Hi Heloise, they said that they wanted to repeat the test before they raised My dose and because it had dropped to 1.97 when they repeated it they said it was fine.
I agree with everything you said and I am disgusted by the way that patients who have thyroid conditions have to fight to get the right treatment that will help them!
Thank you for posting the videos that is very helpful, and thank you for all your help and advice, you are very kind. I am currently trying to wean off the sodium valproate and in the future, I hope to do the same with the venlafaxine. I am hoping that the private blood test that I am having soon will shed more light on the situation, and I will then try to see a good doctor or endocrinologist.
Heloise I thought ecxactly the same thing. I've also been offered hysterectomy for PMDD but refused. Still struggling though a bit like hawkwind. Could you please have a look at my last post? Thank you
Hi Brubru, Such a terrible state you are in and no help from the medical community and left to deal with all these symptoms. I'm thinking the GPs have serious mental problems and can't even help themselves. I learned long ago that chronic disease is not within their realm. I hope you can use the link to Hawkwind and watch the videos.
The difficulty is having to use trial and error and now you say you may feel worse. Definitely your harsh periods are a sign of hypo but I wonder why such a fairly high dose (2 1/2 grains?) is not providing relief. I wonder if you have reverse T3. Guesswork makes it difficult.
I was on a BB by a medical doctor who saw for himself the deficiency of treatments for chronic conditions. Dr. Bergman and Dr. Clark both seem to line up with what I heard for ten years. Pharmaceuticals are counter productive and even pain pills are to be avoided if you can, brubru, but don't suffer needlessly.
I didn't realize how involved the adrenals were to all other hormones and regulate the sex hormones as well as steroids. The question is whether you need to support them or stimulate them. If you can figure that out, low dose hydrocortisone for a time might work very well. The saliva test could tell you that. If it is not a cortisol problem, your monthlies may have caused such low iron that your NDT cannot work for you. Back to the sex hormones, Dr. Bergman says progesterone is a cancer fighter, it's the only thing that builds bone and balances out the excess estrogens which fool the thyroid in some way. You may want to stay with it.
I think it would be safe to take iron supplements which they recommend four hours away from your NDT. I used to take mine close to bedtime with either ascorbic acid or some orange juice since it is needed to break it down.
Your adrenals need a lot of magnesium (which is difficult to absorb and that's why they make laxatives using it) so a chelated version or glycinate or taurate are superior to oxide.
Take a 1/2 teaspoon of mineral salt in the morning in some juice. How is your blood pressure? Throw out your white salt, it's not good for you. I think your adrenal shortfalls may be the cause of your lack of progress, but, you know I am not trained but recognize some of these internet doctors are following newer research which is ignored by conventional medicine.
bru, keep in mind that your body wants to heal and will if given support and food that is nutritious. Quality protein is recommended.
We have to allow your NDT to get to work and it obviously isn't doing enough.
I'm glad to hear that. We try to encourage people to continue pushing against the blockade and if you do not find a good doctor who will help you, please continue to post. I've said this is not rocket science and following the simple protocol that most GPs use is very easy to do yourself if you have to.
Of course, any other disease outside thyroid have to be acknowledged or ruled out.
Am so sorry t hear of your troubles. Your GP is so harsh and clearly not that well informed. I would definately find a different GP. There are only certain GPs in my surgery that I will see. I am on a NDT and they call it 'funny meds' !!
Email Louise Warvill for a list of the good docs. You do have the right to a second opinion and so your GP should refer you but if no one else is sympathetic then you will have to go private am afraid.
According to the famous Dr Lowe such a low dose of thyroid meds will be doing exceedingly little but maybe enough to bring the TSH down and suppress even further your own production of ft4 making the situation even worse.. Your FT4 is low showing that you are under medicated. You may not need to go to a NDT or T3 but simply need more Levothyroxine. 25mcg is not even a starter dose!
Am so sorry you are suffering -it is outrageous!! Big hugs xx
Without the FT3 result - your GP is plucking a diagnosis out of the air. Every cell in your body has a receptor for T3 - so when the T3 result is low then you know that there is not enough T3 to service all the cells of the brain - heart - liver - kidneys and so on. I would also hve the thyroid anti-bodies tested - Anti-TPO and Anti-Tg.
Just to add - have you had your VitD tested ? I am thinking that your B12 level is looking reasonable as there will be some B12 in the Multi-Vitamin which can skew the result - making it look better than it really is
You deserve better treatment - and a treatment that will free you of additional medicines that may be making you feel more unwell. Hope you soon feel stronger to fight your corner
Hi Marz, thank you very much for all your help and advice, I really appreciate it, I will ask my GP to test my VIt D, but I don't hold much hope because she refused to test my FT3 and thyroid antibodies so I am having them tested privately instead. She is useless!
I am having the private blood test tomorrow, Blue Horizon told me not to take my levothyroxine, sodium valproate, venlafaxine, fenofibrate or estrogel before the test. I understand about the levothyroxine but im just a bit worried that if I don't take my other medication beforehand it will not show how they affect my thyroid, what do you think?
I would follow the advice of BH- sorry I cannot offer advice as I have no experience of medicines affecting the thyroid tests as the only thing I take is T3 - along with a tray full of supplements
Could you add the VitD test onto your list of private tests ?
Do you have any gut problems apart from the constipation ? Poor gut health is linked to so much ill health - including depression.
WE MUST LET THE BMS (British Medical Society) KNOW OF THE PROBLEMS WE ARE EXPERIENCING WITH LOCAL GP'S OVER THE TESTING AND PRESCRIBING OF DRUGS FOR THIS DISEASE.
Hello - I am relatively new to Hypothyroidism - diagnosed 3 months ago. Like you I am struggling to get the doctor to recognise that the dose I am on is too low. His argument is that my tsh is now within the normal range (although it is borderline). I am not going to officially complain about my GP just yet as I do feel that his knowledge about giving it time to stabilise my system is relevant. However, like you, I know that my dose is too low. I took a higher dose for a week recently (25mg more) and what a difference! I felt almost normal! (apart from the fat tyre around my middle which is not normal!) (GP's still fail to see that often the patient knows their own body better that the GP does!)
He has, though, referred me to have a third blood test - which will happen next Friday. If after this, my levels still only show that they are borderline normal (which means he probably won't prescribe me a higher dose...) I will make an official complaint not just to the surgery, but to BMS. I hate complaining however, having read the posts on this site over the past 3 months, I am totally appalled at the attitude of the GP's in general about this disease and I do believe that the BMS needs to be made aware.
So I urge all of you to email/write to the BMS. After all, If they don't know the difficulties we are having as patients, they can't do anything about it. (same as any industry. if the customer doesn't complain and give the feedback, the business won't know what they re doing wrong or what they need to do differently.)
I WOULD IMAGINE THAT GP'S ARE ONLY FOLLOWING THE GUIDELINES THAT BMS HAS SET. The Guidelines obviously need to change!
It always perplexes me. GPs will prescribe a ton of other medicines but not fully explore the treatment of thyroid first. I can relate to you. I was offered the hysterectomy and refused. Still struggling though but I'm off antidepressants too. At the moment only on NDT (self medicating) and all the supplements people mention here. But my PMDD is out of control at the moment so not sure what my next course of action will be. All the best keep posting. Do not give up. Most of what you described is caused by Mal functioning thyroid
All really good comments above. If you are unable to find a GP that is more helpful at your surgery, you could try asking your pharmacist for a medicine review.
That worked for me in that she agreed with me which gave me more confidence to challenge the GP and resulted in referral to an Endo. I am waiting for the appointment currently.
My 10 minute consultation on Friday got to 30 minutes. GP getting twitchy about next patients as I argued her to a bit of a standstill. She reluctantly agreed that the next time I have a "switch off" I could try taking a 25 Levo as an experiment, but she wouldn't prescribe me any as my bloods were "within range". However, and here's the contradiction, my argument was that my T3 was bottom end of range and maybe my body needed it to be slightly higher. No she wasn't happy with that but suggested my D3 level could be higher even though that was within range! She recommended 5000mcg of D3, I was taking 2000. She might be right of course, but isn't it odd that GP's are largely blind to clinical symptoms when bloods are within range? We are all individuals after all and few, if any of us, is "average".
I have only, very rarely, ever heard of anyone in the UK or the US, finding a doctor, who allows them to use t3 or ndt, like you are supposed too...which is raising by elimination of symptoms, not thyroid tests! I think you may have to do it on your own.
Too true Faith. Personally I don't understand this madness of prescribing according to the TSH which is useless once on medication.......I would love to see the evidence that proves this is the most effective way of treating hypothyroidism -don't believe it is out there.
I think it has come about by all the other tests that they go on as being fine if in range -including B12, iron, ferritin etc.... There is a really scary ignorance over the interpretation of blood tests that is truly scandalous.
This coupled with the 10 minute consultation time allowed (5mins in reality) makes it just about impossible to get a proper assessment that includes your physical signs and symptoms. I begin to think of doctors like the white rabbit in Alice in Wonderland and the words 'I'm late, I'm late I'm very very late,' ring through my ears as they disappear down the hole....or in our case as we are thrust out of their doors.
Not intending to cast more doom and gloom but recently I was shocked to find that there is no care outside GP surgery hours -out of hours docs no longer exist, walk in centre couldn't cope with my medical needs, 111 wouldn't advise on alterations needed on medication, instead sent me via ambulance to A&E who though I was kept in cubicle for the night couldn't advise on medication alterations either to lower very high blood pressure and a heart rate rattling along like an express train -even though I had them with me but instead insisted on keeping me there monitored me all night long thensent me to GP in the morning in the same state I had been admitted to them!! T his has happened twice now! All I needed was my meds raising!! For goodness sake!!
All this has left me with no alternative -next time it happens is to do a lucky dip on the meds I have and self medicate, hoping I've got it right. Am shocked -truly deeply shocked. Seems these days a wise patient develops the art of looking after their own medical needs & self medicates. If not make sure you are ill during surgery hours only, providing of course they still have a slot available!! Haha!! Lol.....
Hi Hawkwind, I'm sorry to hear how long you have been so ill.
This is all so complicated - I've had hypo symptoms for years despite results being within range when medicated and I already had a diagnosis of ME. New GP is explore vitamin B12 deficiency which has many of same symptoms and I'm explore magnesium, ditto.
This is definitely not to put you off exploring a higher dose, but just some other things to consider. It would be a shame to miss something.
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