I have posted here before as I think my thyroid has been an issue for a while, I did have unexplained thyroiditis back in 2019.
I haven't got anywhere with the NHS as am always in range so decided to try Thyroid S and have been taking this for a couple of months now (1 tablet a day). My weight has been creeping up over the past year and I feel very tired, itchy skin, high cholesterol, thinning hair and eyebrows etc so many signs of low thyroid.
My latest Medichecks results are as follows (fasting sample taken at 9am)
TSH 1,32 (0,27-4.2)
T3 3.7 (3.1-6,8)
T4 11,2 (12-22)
Ferritin 60 (30-264)
Folate 11.6 (>7)
B12 84.4 (>37.5)
Vit D 71 (50-200)
Thyroglobulin antibodies 16.6 (0-115)
Thyroid peroxidase antibodies 11.1 (0-34)
I had my thyroid checked in a recent NHS blood test and my T4 was low but in range but my TSH was even lower, 0.35 I think.
So am not sure what to do next as I dont feel great and clearly the Thyroid S is not doing the trick. What would be the best way to move things forward ?
TIA
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karlek
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Just linking to a previous post of yours as it (and the replies) provide some useful info for context. healthunlocked.com/thyroidu...
It depends on what you’d like to do. In a way, right now you’re no better or worse off than when you were unmedicated. So you could go back to not taking any Thyroid S, see what that does to your levels and see whether it results in your TSH rising enough for your GP to prescribe levothyroxine.
But the other thing to know is that one tablet (or “grain”) of Thyroid S is actually a low dose. That’s the reason why your symptoms aren’t resolving and why things are getting worse. Your body was actually producing more thyroid hormone before you started the Thyroid S. Taking thyroid hormones doesn’t top up a failing thyroid’s output, it replaces it. It’s not like taking a vitamin tablet.
So your other option is to increase the amount of Thyroid S you’re taking—slowly and carefully of course.
I take it you haven’t stopped taking Thyroid S—you are still taking it?
Thanks Jazz and thanks for the link, am not very tech savvy.
Yes am still taking it, its odd how m TSH seems low even while my T4 is dropping. NOt sure stopping Thyroids S will change that as my TSH has never got very high, never above 4 or so.
My TSH has never been above 3.5 but hypothyroid, doctor who started treatment was ready to start at over 3 thankfully. Good feedback here regarding possible things to do.
Did you ever post about finding a pituitary-friendly endo as I suggested in your last post? Or have you given up on that line of investigation and decided to self-treat? Nothing wrong with self-treating your hypo, but the problem is that if it is your pituitary at fault, your other pituitary hormones are going to stay low, causing symptoms. So, whilst you may get rid of your hypo symptoms, you're never going to be symptom free.
It's not that the Thyroid S isn't do its job - it's a hormone, it does what it can, it's not like aspirin that might relieve your headache and might not. The think is how your body responds to it. And, as Jazzw says, you're only taking a small dose. The FT3 has gone up a teeny bit, and your FT4 has gone down because of the T3. That's the way it works. So your body is recognising that it's there. You just need to slowly increase the dose.
I didnt manage to find anyone to help, the list from thyroid UK doesnt give details of specialism so I kind of gave up. Am in Norfolk so there are no local options. I will have another look to see if I can locate an endo who works online and is pituitary aware. Do you know how best to pursue this?
I get so overwhelmed with all the info that I cant see the wood for the trees.
Well, I did suggest you post on here asking for recommendations from people who have already found an endo that knows about pituitary problems. There are quite a few such people on here. I don't suppose it would be mentioned on the list, no.
I've done a quick look and there are several pituitary specialists in London. I dont know if you can travel or if they do Zoom calls. There 's an NHS website impendo.co.uk/for-patients/..., they are NHS but also offer a private pituitary service.
if you phone the pituitary foundation and talk to one of the nurses they can advise and point you in the right direction re consultants. iT sounds to me like you have hashis. The range of normality for tsh in this country is very wide. Most people are ill if their TSH goes above 3.
I managed to get a diagnosis of central hypothyroidism last year - finally. It was a battle but got there in the end. My biog gives details of how I did it. I was in a similar position to you with normal TSH blood results and FT4 low but just in range. Awful symptoms. Feeling much much better now on Levothyroxine. I will message you with the consultant who diagnosed. He does zoom consultations.
Possibly all of them. I don't know about all the different symptoms of all the different hormones, that is a huge subject. But certainly Human Growth Hormone would cause those symptoms - with the exception of high cholesterol, I think that is just a thyroid symptom. All I can tell you is that when I was having HGH injections, I had much more energy, my hair grew and I lost weight.
But, before you ask, no I didn't have a general pituitary problem, just low HGH. A lot of hypos have low HGH because you need good levels of T3 for the pituitary to produce HGH, and at that time my FT3 must have been very low, I don't remember the numbers but my TSH was over 11, so it must have been low.
Then there's ATCH. I don't think ATCH itself causes symptoms, any more than TSH does. But ATCH stimulates the adrenals to produce cortisol. And low cortisol will cause a lot of that type of symptom.
I take Vit D, Vit C, magnesium, zinc and just added Berberine to see if that will help with high cholsterol and glucose /weight gain (am prediabetic as well).
If you have an underactive thyroid (hypothyroidism), treatment may be delayed until this problem is treated. This is because having an underactive thyroid can lead to an increased cholesterol level, and treating hypothyroidism may cause your cholesterol level to decrease, without the need for statins. Statins are also more likely to cause muscle damage in people with an underactive thyroid.
Obviously taking inadequate dose of replacement thyroid hormones, especially NDT as it contains T3 …..lowers TSH and this can make you more hypo than before taking it….because it reduces your own thyroid output
Ideally you would have tried levothyroxine first as it’s much easier to manage as it doesn’t shut your own thyroid down as quickly……and can be easier to increase dose slowly upwards
You could see thyroid specialist to get diagnosed and prescribed levothyroxine
Here’s link for how to request Thyroid U.K.list of private Doctors emailed to you, but within the email a link to download list of recommended thyroid specialist endocrinologists
Ideally choose an endocrinologist to see privately initially and who also does NHS consultations so that might eventually transfer to NHS
Igennus B complex popular option. Nice small tablets. Most people only find they need one per day. But a few people find it’s not high enough dose and may need separate methyl folate couple times a week
Thorne Basic B recommended vitamin B complex that contains folate, but they are large capsules. (You can tip powder out if can’t swallow capsule) Thorne can be difficult to find at reasonable price, should be around £20-£25. iherb.com often have in stock. Or try ebay
IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 5-7 days before ALL BLOOD TESTS , as biotin can falsely affect test results
In week before blood test, when you stop vitamin B complex, you might want to consider taking a separate folate supplement (eg Jarrow methyl folate 400mcg)
ferritin
Look at increasing iron rich foods in diet
Eating iron rich foods like liver or liver pate once a week plus other red meat, pumpkin seeds and dark chocolate, plus daily orange juice or other vitamin C rich drink can help improve iron absorption
This is interesting because I have noticed that many patients with Hashimoto’s disease and hypothyroidism, start to feel worse when their ferritin drops below 80 and usually there is hair loss when it drops below 50.
I had a Glucagon Challenge Test because the endocrinologist suspected a pituitary problem, owing to history of a traumatic brain injury. The six-hour in-hospital ordeal established that the pituitary is working fine. It just doesn't report useful information for establishing thyroid hormone replacement protocol.
I've spend the six months since then gradually titrating my Thyroid S dose up to three grains. I measure my resting heart rate as a guide. If my heart is racing when I'm lying in bed about to go to sleep (80 bpm), then I've adjusted the dose too quickly. If my pulse is in the 60s when I'm reclining and relaxed, then I'm not overmedicated. (When I was really hypothyroid, my resting heart rate would dip to 49 bpm)
It's no wonder the numbers were in the gutter on a single grain. I was falling asleep at various hours across the day, nodding off due to lack of power to my cells.
One endocrinologist suggested that FT4 might never go high while I was on NDT. I don't know if that's true when the dose is tripled from what they prescribe. I was advised here that we have to go by physiologic symptoms we can measure at home, rather than TSH and FT4, if we're dosing with NDT.
I never got anywhere with levothyroxine. It made me sick.
It's hard to find a doctor who's equipped to help with this. You have more experts here, and they have time to reply to your queries.
Following this post as I'm in a similar boat. Low ts4, normal tsh but GP thinks that's fine. Prescribed me 25mg levothyroxine to try because I pointed out I had chronic fatigue and no eyebrows, eyelashes and hair loss on my head.It has really made a difference to my energy levels even though I'm allergic to the product. I've now booked an appointment with a private endocrinologist to try to make sense of this as my gp didn't seem to think I needed any help as my tsh was within limits.
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