I have just wasted a few months, effort, hope and £500 seeing an endo privately. after 2 visits - she told me I would just have to slowly increase levo - by one quarter of 25mcg per day [I currently tolerate just 25mcg daily].
I have been hypo for nearly 30 years -have hashimotos. I have tried this suggestion many times and end up feeling so bad I have to drop dose back to 25mcg. Its happened again.
This private endo whom I saw at a private hospital gave a pretty poor service. Follow up letters were not sent to me or GP and I had to chase these up both visits. Had to chase for receipts. Spelt my name wrong and had written incorrect info on case notes!
My GP is very conventional and has not come across any other treatments for this condition. Meanwhile I get prescribed no end of meds for all the resulting conditions I am suffering from. I take as few as I can get away with! The diagnosis 2 years ago of fibromyalgia - for which I have elected to take no meds - has not helped.
My GP wants to refer me to an NHS Endo for another opinion. I have been to Addenbrookes Cambridge a couple of times over the years - end up seeing registrars or juniors. Last one I saw spoke such bad English could hardly understand him..
So wonder if there is any chance there is a specialist in Suffolk or Cambridge area.... OR ANY private endo who may be able to help. I have wondered about seeing Dr Skinner.
The only other option is to self medicate - I am nervous to do this - and I do not know how to obtain Armour thyroid to give it a trial.
Any input or advice would be appreciated.
S
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trickydog
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...just wondering if you have any copies of recent blood tests with their ranges. If so then do post them and someone will be able to help you. Fibromaylgia often accompanies Hashimotos and can be the result of LOW T3 too. Is your Levo - however small a dose - converting into the ACTIVE T3 hormone ? Have you had all the basics tested - B12 Ferritin Iron Folates VitD....they all need to be near the top of their ranges - docs often happy if they are just in range ! Do you supplement any of them at the moment ?
I too have Hashimotos/Crohns/Fibromyalgia and have not consulted anyone other than Dr P.....who helped me with various supplements and of course is always there - or his team - when you are in a pickle ! I found I learnt a great deal from others on this forum and from good books and websites.
Hashimotos is auto-immune as you know - auto-immune illness starts with inflammation in the gut as a rule - causing Leaky Gut Syndrome. Healing the gut is the first thing to try and do. Check out Izabella Wentz on the net and sign up for her Newsletter. Her book is also very good - Hashimotos Thyroiditis - The root Cause.
Am happy to answer any questions you may have - do hope you soon feel better - and sorry you have had a rotten time finding good docs....they are a bit like hens teeth .....
I have most of my readings - plus am pretty conversant with conversion problems. Have a lot of books on the condition. As you say - docs are quite happy with readings that are barely in range. I can post the latest ones -I havent got them to hand at the moment.
Also I have had a lot of stomach problems. I have considered seeing Dr P and have his book which I have read several times. I have been concerned to go down this route - not only because of the difficulty of actually physically getting to see him. Everything is a very up hill struggle - as I am living alone and have to run my business [also single handed] a dog training school - which demands continuous effort. All my energy actually. This is my only source of income... so finances are an issue too. However, I WOULD make an appointment if I felt it would help even a little bit.
...your 25mcg dose is really on a starter dose - and as you feel unwell when you increase then maybe a different tablet is required. Have a look at your FT3 reading on your last blood test and see where it is in the range - needs to be near the top.
Vitamins ? Supplements ? Many people on this forum self medicate - its not a formal policy of the site. I am fortunate to live in Crete where obtaining tests/results/consultant appointments/medication is so much easier than the UK.
If you want an endo in Suffolk that will do untold tests, get right to the bottom of things and refer you to other consultants if he thinks you have additional problems then my endo is great. He is also very good at keeping you informed of what and why he is doing certain things and why he thinks you need certain tests.
Since being under him I have had adrenal tests, heart scans, bone scans, am due to see a gastro in a couple of weeks, have had every blood test under the sun and am 200% better than I was when I was under my GP's care. He knows (after a rocky start and a few arguments) that I know what I know and that he cant easily fob me off so whether that has made a different in my treatment I don't know.
Unfortunately he does not easily prescribe T3 but you could always go and see him for any tests or referrals you think you may need which would clarify, or not, what is happening with you. He did say to me that I might end up back on T3 (I was taken off of T3 due to heart issues) so he is not totally anti T3.
If you want his name you will have to PM me as we are not allowed to name doctors on this site.
What is he like about adrenals? I ask as I am looking for a 2nd opinion from an endo on the NHS and I'm not convinced I don't have adrenal insufficiency as I think my first endo may have ignored some low results on my short synacthen test, though it's hard to know without precise ranges. Anyhow, if you could PM me your endo's hospital and name I'd be grateful.
I went privately hansaplatz. She asked for a 9am cortisol test - which was in range. If it had been low she would have asked for a synthecin test. I had one of these about 8 years ago and it was negative. Apparantly these tests only show adrenals that are totally wacked.
How can I PM you. I am interested in knowing this consultants name please. My daughter has Graves and I think we are at a stage of needing a second opinion. Thanks. Lisa
Sorry misread that - I will MP you and then all you have to do is answer so keep an eye on your little white envelope on the green bar at the top of the page.
If you want to MP someone all you have to do is click on their name, in blue, by their photo and a new page comes up with a yellow box that says "send a message". Press that box and a new screen will come up, which is your message screen - sounds complicated but it isn't. When you see a number one by your little white envelope in the green bar at the top of the page just press the envelope and it will automatically take you to the message.
Hello - following a scan (after bowel cancer 5 years ago) 2 lumps on adrenal glands were discovered and for the past year or so have had felt flooded with a fight/flight type response, tingling tongue, heart palpitation etc. Sister has hypothyroid and niece had thyroid cancer. The endocrinologist GP referred me to did'nt listen, was dismissive and said there was only one adenoma then backtracked and said it was because one was bigger than the other! No help so far and symptoms worsening. I would like to find a good endocrinologist in or around South Cambridgeshire, Suffolk, Essex, Herts area if possible. Please help by signposting if possible. Thank you
There are not any good ones in Suffolk or Cambridgeshire. I live in Newmarket and have seen one in our area on the NHS . Rubbish, Rude and would not listen. I self medicate now and feel Ok on Armour. I know it was a risk but the professionals were no help to me and just wanted to keep upping my dose of Levothyroxine which was making me so ill. I asked before on this site if anyone knew of a good one and they did not for this area. So if you have the money, I think Dr Skinner is the way to go.
Thank you for taking the time to answer me Vanessa2. I come from Newmarket area and am unable to function - let alone work on levo. I have seen several local endo's and have had similar experience to you. The last one could barely speak English. Its nearly 30 years now.
Others have pointed me to Dr Skinner too...I haven't really got the money - but will find it.
You say you feel ok on armour - I wonder how liong you have been taking it - and was it easy for you to change over onto it.
I have Bi-Polar & the under active thyroid is one of the side effects you get from it. 20 years I have had it. My GP would not support my going onto Armour. So had to go it alone, was so desperate. I am doing great on it.
That's brilliant Vanessa. did you feel a lot worse before you improved? the reason I ask is that I have remained all these years on a 25mcg of t4dose - when correct dose should be about 100mcg. I can tolerate this. However with gentle increase of only 12 and half mcg - initially feel a bit better [less exhausted] then feel worse than ever - very irritable, depressed and tired and nowadays the fibromyalgia increases.
GPs would like me to take anti deps - but again side effects are dire and have to stop. I teach dog training for a living and am unable to function as so sensitive to most meds so far prescribed. Of course cant afford to take time off as if did would be difficult to start the school and courses going again.
It is great to hear that you are benefitting from from NDT.
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