I think I've read about this happening on another post but want to check. Thanks. As soon as I started taking 100mcg T4, I got high pitched tinnitus (I was over prescribed) and now I have 25mcg T4 plus 10mcg x 2 T3. The T3 also increased the tinnitus with pressure in ears. I'd like to try something different.
Thank you
It’s virtually impossible to get NDT on NHS
What vitamin supplements are you taking
When were B12, folate, vitamin D and ferritin levels last tested
Low B12 is often linked to tinnitus
I have 25mcg T4 plus 10mcg x 2 T3
That’s an extremely low dose levothyroxine alongside T3
What are your most recent thyroid results
Which brand of levothyroxine are you taking
I had blood tests today so results next week. Never had ferritin, B vits or foliate tested before.
Vit D on 20/8/24 was 96.6
I take 2800iu vit D per day; 1800miligrams calcium; vit K2 120 micrograms; soya isoflavins 50 milligrams; vit C 1000 miligrams. Plus transadermol oestrogen gel.
I put 4 hours between T4 /T3 pills and other medication/supplements.
T4 is Teva levothyroxine
T3 is Roma Liothyronine Sodium
The last serum TSH was 20/8/24 and was 3.64, although I was told 4.01. (0.3 - 4.2)
Thanks!
Was last dose Levothyroxine 24 hours before test
And last 5mcg or 10mcg T3 approx 8-12 hours before test
Aiming for TSH around or more usually BELOW one
Ft4 at least 50-60% through range
FT3 at similar level
The test was 23.5 hours since last T4 and 15 hours after T3!! There was a mix up of blood appointments...and I had to go back the day after...long story!!
Teva brand Levo upsets many people
Do you need lactose free meds?
Are you on dairy free diet
Vencamil is lactose free and mannitol free. Often best option for many people
Now available in 25mcg, 50mcg, 75mcg and 100mcg tablets
Soya of all kinds not recommended for anyone with thyroid issues as soya can block thyroid hormones
Thanks - as far as I know I am not lactose intolerant. I will talk to Endo about changing brands. I take soya isoflavones for osteoporosis - I make sure they are 4 hours away for any thyroxine. I though that was OK...??
I'm prescribed NDT by NHS.
BUT it was originally prescribed by a bit of a maverick GP who had an underactive thyroid herself. She didn't take NDT but she was open to others trying it if levo wasn't working for them. She has since retired and I'm just keeping my head down in case any other GP in the practice decides to look into it (i.e. decides it's too expensive and I'll be fine with levo - hint, I won't.) Also, I'm in Scotland, and I think the rules here re thyroid meds are if the patient is doing well, leave them alone.
I had 2 operations six months apart to remove my thyroid. Removed a large goitre the first time then discovered a large irregularly shaped growth had appeared on the remaining part about 5 months later.
I was tired, no energy, forgetting words, barely coping, etc. on levo with no thyroid. I didn't suffer from tinnitus but I do remember feeling, as soon as I stopped levo, that my low-level pressure headache that I didn't realise had been with me constantly, had disappeared.
I still don't feel 'normal' but I'm a lot better than I was. I do have to keep an eye on Vit D, B12, ferritin, folate, etc. as they are often low and that makes me feel tired, no energy, etc. (And I keep forgetting that's probably what's causing it!)
I had RAI in January and became hypo in April, so have no functioning thyroid. I think it is early days for me and I will have to see what the different variables are and what works for me. The tinnitus began immediately same day I started T4 100 micrograms. It was too much and I also got ischaemic irregularity. 50 also made me ill, so it is now 25 with the T3. T3 also led to ear pressure like descending in plane - horrible.
I have had lots of back flare ups (L4/L5 & L5/S1) since August and now got inflamed fat pad on heel which my physio says is of symptom of reduced tolerance and an impaired stress response (HPA axis dysfunction aka adrenal fatigue). He thinks I've got central sensitisation, which I had never heard of. I've been on 'rest and recuperate' for 4 weeks now. he thinks RAI affected the adrenal glands as well as thyroid.
Hey ho - it's a drag to say the least!!
I think you really do need T3 in some form if you have no thyroid. Unfortunately, it takes so much time to sort everything out and there's no way you can make it happen faster. As Slow Dragon says, check B12, folate, vitamin D and ferritin. If they're not right it can knock off everything else. And post results with ranges on here. GPs tend to say everything's fine as long as it scrapes into range. It's best to be optimal.
I will do 🙏 it is the Endo who ordered the tests after I wrote to him citing Clinical Endocrinology Vol90 paper: Clinical Endocrinology, Vol 99, issue 2, pp206 – 216 onlinelibrary.wiley.com/doi...
I came across this on this forum and it s very helpful. I also asked him to test folate, ferritin and B12. So far he seems an open person - but who knows!!
Central sensitisation is a bit of a catch all, its often used to describe pain or other uncomfortable sensations like pins and needles, numbness, headaches, gut issues like IBS. Its what they believe causes Fibro, migraines, IBS, complex regional pain syndrome.
In a nutshell the central nervous system is constantly on high alert, rather like a car alarm going off all the time, this state of over sensitivity leads to faulty, or exaggerated nervous system responses to stimuli.
So something that might cause a healthy person momentary discomfort will be felt as pain by somone with central sensitisation. The pain is real, not imagined because the central nervous system is so sensitive. The pain can be long lasting and often becomes chronic.
There is rarely any physical cause like an injury or actual disease like say arthritis causing the pain, although having a chronic pain condition like arthritis can be a trigger, but the nervous system sends incorrect signals to the brain. As I said its not a psychological condition, but a faulty neurological system.
Causes can be physical, surgery, injury,certain drugs, trauma either physical or mental, PTSD, another medical condition, genetics or sometimes no reason is found.
Thank you Sparkling sunshine
Also inflammed fat pad on heel can be a sign of Plantar Faciitis, which seems quite common in people with hypo. I had it years ago and exhausted all the usual treatments and ended up with surgery to cure it.
Hi Caradoc1a, I was prescribed Armour on the NHS after it was recommended by a private doctor. It is possible although I believe rare.x
That's great!! Let's hope it continues for you... 👍
I don't because I tried it privately and it didn't agree with me but -- my GP did say that she had a couple of patients on it and that if I tried it privately first for six months or so, and it worked then she would prescribe it. I don't know if yours would be receptive to that.
Wow, that sounds like a reasonable GP. I'll see what the Endo man has to say!!
Good luck. I hope you get lucky. 🤞
My daughter did for years , but then a while ago, it was stopped!
Caradoc1a, The following info is not meant to deter you from trying to get NDT prescribed, only to make you aware of the situation you will be facing if you decide to try.
Getting desiccated thyroid (NDT) prescribed through the NHS is extremely difficult, for two main reasons.
Firstly, it is an unlicenesd medicine in the UK. This means that the individual prescribing doctor has to take personal responsibilty for prescribing. The vast majority are unwilling to do that ( they feel that it's more than their jobs worth).
Secondly, NDT is vastly more expensive for the NHS to fund, so the majority of local funding bodies will not foot the bill for it.
Even if and Endo or GP agrees to take responsibility for prescribing, the local funding body can, and frequently does, refuse to fund it. Lots of people who were getting it prescribed have eventually had their prescriptions for NDT stopped for this reason.
If you are one of the very few fortunate people to eventually get it on NHS prescription, that prescription can be stopped at any time, typically for funding reasons. And, if the prescribing endo/GP moves away, retires etc. the prescription automatically stops because he/she isn't there any more to take personal responsibility.
Thank you RedApple. Bit of a nightmare really. I can't see it happening given the legal context. I was so naïve thinking it would be all so straightforward - get RAI and then start taking thyroxine and all would be fine!! 🙄🙄😬 Just got to wait for bloods to come back and then think on about what to do.
Thank you again - everyone is so helpful here. It's wonderful.
My friend uses Metavive, which is classed as a supplement and is not on prescription. Consequently it does not state potency of ingredients. Do others use this? And how do you use it, given lack of info about levels of active ingredients?
I can't speak from experience, so probably best to start a new post asking those who use it to tell you of their experiences. I assume you'll need to be prepared to experiment, work by trial and error and do very regular private testing to see how it's affecting your FT4 and FT3 levels. May not be a good idea to go 'off piste' with this approach until you've exhausted all conventional prescription medication treatment routes.
What Does NDT Contain?
Just been prescribed t3 and have a few questions…
NDT plus T3 top-up anyone? 
What function does T4 have?
NDT does this medication contain fillers🤔
