Like many people on this forum I am overwhelmed by the sheer number of things that seem to be going wrong with me. I'm hoping some of you wise people maybe able to give some clarity.
My thyroid results are
TSH 0.04 (0.35-4.94)
T3 4.6 (2.40-6.00)
T4 9.5 (9-19.10)
My Endocrinologist is not happy with my TSH (no surprises there) and wants me to cut my T3 from 2 x 5mcg to 1x 5mcg daily and to increase my levo from 50 to 75mcg daily. I do not understand why, with such a low TSH, my T4 and T3 are not higher. With such a low TSH there is also not much room to manoeuvre. Could these results point to another problem eg with my pituitary?
From Autumn until now I have had ongoing problems - acute bronchitis and pleurisy, flare of lichen sclerosis, UTI and kidney infection, IBS and now ?gastritis/ulcer (a gastroscopy awaits!). I feel nauseous, shaky and tired. I have been too unwell to have my second shingrix jab, or to start on bone medication which is urgently due but over which I have acute anxiety. I have also been unable to taper my long term steroids (for PMR) - am on 7.5mg daily.
My other blood results are
B12 475 (200-900)
Folate 9.9 (3.00-20.5)
Ferritin 59 (30-250)
vit D 97 (50-200)
hbA1c 41
Where do I start to sort myself out?! No doctor seems to be able to look at the bigger picture or to understand auto-immune conditions. Thank you in advance for any comments. I apologise if I'm not able to reply immendiately.
Written by
FleetRose
To view profiles and participate in discussions please or .
Your TSH is low because you are taking T3. That's what T3 does, and your endo should know that! And should NOT be dosing by the TSH. And lowering your T3 dose and increasing your levo is unlikely to change that - or to help anything else come to that. But this is what endos do, and they seem incapable of learning from experience and always seem to expect a different outcome (isn't that the definition of insanity?).
I would start by getting a new endo - if that's at all possible. This one is never going to make you well unless you start putting your foot down and demanding better, more intelligent treatment. And he's probably doing to make you a lot sicker.
Failing that, start by optimising your nutrients, because they're all too low.
I’d add to Greygoose’s very pertinent reply that you probably haven’t got a large number of things going wrong. Many of the symptoms and conditions you have will emanate from insufficient thyroid hormones and low nutrient levels. You need a good endo to ‘join the dots’ but sadly I think they’re almost extinct.
The wisdom and experience of members of this forum will support you as you battle to regain your health.
Thank you greygoose and NorthernLights for your prompt replies. I will write a new post asking for any recommendations (by private message) for a good endocrinologist and meanwhile try to optimise my nutrient levels (I didn't think they were too bad?!)
I realise Hashimotos can be the cause of many symptoms and conditions and I still wonder whether I do have PMR or whether it's muscle problems related to hypothyroidism.
That one's not too bad but would be better over 550. Below that you can develop a lot of neurological symptoms that might or might not be permanent. With B12 it's not so much about the numbers but the symptoms. However, as low B12 symptoms strongly resemble hypo symptoms, it's difficult to tell which is which. So, best to be safe and get your B12 higher.
Folate 9.9 (3.00-20.5)
Should be at least over mid-range. So, what with that, and needing to raise your B12, your bets bet would be to get a good methylated B complex with at least 400 mcg methylfolate.
Ferritin 59 (30-250)
Much too low. Ideally you should get an iron panel done to see what's going on.
vit D 97 (50-200)
Would be better over mid-range, I think. But I'm a bit hazy about vit D. If you're going to supplement it, don't forget you also need to take vit K2-MK7 and magnesium.
I think there's a strong chance that your PMR is due to your low thyroid hormone levels. Your whole body needs thyroid hormones, every single cell. And if there's not enough to go round, all sorts of malfunctions can occur.
Thyroid affects your metabolism- which isn’t just about calories! It’s also about how energy and nutrients are able to enter cells so THEY can do their job. This is why lots of people with thyroid issues suffer from fatigue (even if they’re hyper/anxious) and neuropathy or various pains/spasms. It’s your body’s reaction to deficiencies due to the metabolic issue.
I didn't realise steroids would lower TSH. I am taking Accord/Almus levothyroxine. I would like to try increasing the dose slightly though I know I do not convert T4 to T3 well (I did the deiodinase test).
I take zinc, selenium, B complex, magnesium citrate, D3 with K2 plus BioCare OseIntensive with calcium citrate, D3, K2, manganese, boron and silica though I must admit I've been a bit more hit and miss with the supplements lately. I'm also on bHRT and melatonin 2mg at night.
I'm on a gluten free diet but do eat some dairy, mostly natural organic yoghurt (no milk).
Reading your bio, I'm sorry you've had such an incredibly difficult time. I was interested -I also have had long term discomfort in the kidney/adrenal area. I've certainly had anxiety for years but then I've had Hashimotos for at least 25 years!
Thank you again. It's wonderful to have people out there when I am at a low point.
Sorry to hear your having a real struggle at the moment. I think HRT can also reduce effectiveness of thyroid medication. I started HRT for my bones 2 months ago (at a ripe old age) and have had to increase my thyroid meds already.
I notice that you use a Marodine LiV. I too have been wondering if it is a worthwhile investment. How are you getting on with it?
Low thyroid hormones can actually have a big impact on your immune system, so when levels are low, you are much more susceptible to infections. So this could actually be a sign that you are not well medicated and need an increase.
Your TSH is low as you are taking T3, and as others have said your endo should really know this. An increase to 75mcg T4 sounds like a good plan (although some people are okay with a low T4, but worth trying a higher dose). I would not lower your T3 though, as your T3 is already not very high. In addition, as you are taking T3 because you are not converting well, the additional T4 might not succeed in raising your T3 levels by a lot (and you might just stall that small increase by lowering the T3 beforehand). You might actually need an increase in your T3 as well down the line. But obviously one step at a time, I would take the additional T4, leave the T3 as it is and then test after 6-8 weeks to see what effect it had.
I agree with others that you really need to work on your nutrients and as greygoose has recommended, take a good vitamin B complex, e.g., Igennus Super B complex or Thorne B complex (available on Amazon). The iron is on the low side, but as mentioned, perhaps good to do an iron panel before starting supplementation. Vitamin D is quite good, continue with the supplementation.
If you have difficulties remembering to take your supplements, perhaps buy one of these daily medicine trays where you can put all the supplements you need to take on that day. This way you can see if you have taken them or not, so you are more consistent. After a while, you are getting used to it, but at the beginning it is a good reminder and assists you in getting those levels higher!
Hello Tina_Maria and Aimee527, thank for replying. I certainly don’t feel over-replaced but maybe I need to back to basics and take my pulse and basal temperature every morning as recommended by the late Dr Peatfield. I think that would be a useful thing to do before seeing a new Endo.
At the moment I take Lamberts Methyl B complex but will swap when I have finished them. I believe one of the Bs you mentioned is a large tablet. Please can you let me know which one if you know as I’m not good with large tablets to swallow.
Thank you for the advice about the pill tray. A good idea as it is becoming increasingly difficult to remember - more so if I’m away from the house and my usual routine.
The Igennus Super B complex are small round tablets and quite easy to swallow, so you could try these and see how you are getting on? Perhaps get a smaller bottle first and see how you do and if all good, you can get the bigger pack (a bit cheaper per tablet). Take some magnesium as well if you have some at hand. As they say - every little helps!
I am not as knowledgeable about thyroid issues as many of the people on this forum. However, I have Hashimoto’s, and I have the same symptoms as you mentioned when I’m getting too much levothyroxine. My symptoms include pleurisy, eczema, IBS, and headache. I have determined that when I am taking too much levothyroxine, my body produces too much histamine, and histamine is the culprit behind pleurisy, eczema, IBS, and my headaches. To give you a better understanding of my situation, I do not take T3 or T4, just levothyroxine (Synthroid, 112 mcg) each day. Good luck!
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
High TSH with Low T3 & T4
Very low TSH and High T4
Hashimotos/low tsh but low t4 and t3 help
Optimum TSH, T4 and T3 levels on levothyroxine
T4+T3 combo
