Still having hypo symptoms : I had been on 150mcg... - Thyroid UK

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Still having hypo symptoms

Manjiajk profile image
14 Replies

I had been on 150mcg of thyroxine but due to still being hypo, this was increased to 175mcg. I saw an endo privately and as I was still having hypo symptoms, my thyroxine has now been increased to 250mcg, which is a lot more than I should be on in relation to my size. The endo has checked my vitamin.and minerals and these are all at optimum levels. Despite being on 250mcg of thyroxine per day, I'm still exhausted. The endo thinks there could be an absorption issue so I'm now on a low carb diet. In some respects, the more thyroxine I take, the worse I feel. I was wondering if anyone has experienced anything similar?

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Manjiajk
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SlowDragon profile image
SlowDragonAdministrator

Read in your profile that you are/were anaemic

Levothyroxine needs OPTIMAL Vitamin levels

What were most recent results and ranges for Ferritin?

Are you on iron supplements

If so important to test levels regularly

What about vitamin D, folate and B12 levels

What vitamin supplements are you currently taking

Obviously you need to have FULL thyroid tests 6-8 weeks after each dose increase

What were most recent TSH, Ft4 and Ft3 results and ranges

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .

Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

SlowDragon profile image
SlowDragonAdministrator

As you are lactose intolerant are you on lactose free levothyroxine tablets (Teva or Aristo) or liquid levothyroxine may be better absorbed

As lactose and gluten intolerant you likely need small dose of T3 prescribed alongside levothyroxine

Have you had Dio2 gene test?

thyroiduk.org/getting-a-dia...

Manjiajk profile image
Manjiajk in reply to SlowDragon

I haven't had the test. I can tolerate goats dairy, but not cows dairy. My endo has told me to cut out dairy altogether, which I have. I did wonder if I'd need T3.

Manjiajk profile image
Manjiajk

I used to be anaemic, but haven't been for a while and suffered from non-iron deficiency anaemia. Vit D, folate and B12 are all fine.

greygoose profile image
greygoose

Despite being on 250mcg of thyroxine per day, I'm still exhausted.

Did he put you up from 175 mcg to 250 mcg in one go? If so, that was far too much. Levo should be increased by no more than 25 mcg every six weeks.

which is a lot more than I should be on in relation to my size.

Your size has little to do with anything. You need what you need, and all sorts of factors can affect how much you need.

The endo thinks there could be an absorption issue so I'm now on a low carb diet.

It's all very well thinking, but has he done anything about finding out if you have an absorption issue? You can tell that just by looking at your lab test results - as long as you have the full testing done: TSH, FT4 and FT3.

Does he think the absorption issue is in the gut, or at a cellular level?

If it's at a cellular level, a low carb diet won't help. But, if your carbs are too low, that could affect your conversion of T4 to T3, which would make you more hypo. So, be careful with low carb diets. You need carbs to convert.

The endo has checked my vitamin.and minerals and these are all at optimum levels.

Does your endo actually know what an optimal level is for all nutrients? If I were you, I would post the results and the ranges on here to check.

But, if they are all optimal, that would rule out an absorption problem in the gut.

Really not possible to say anything else without seeing labs, with ranges. :)

Manjiajk profile image
Manjiajk in reply to greygoose

I'll dig out the ranges later. He thinks the absorption issue could be in the gut. The increase of thyroxine has been over the space of two months. Hes a good endo and has been recommended. The NHS endo I had was clueless. I'm not working at the moment so he wanted to keep the cost down so rather than doing a load of tests, hes gone for the more cost effective approach.

greygoose profile image
greygoose in reply to Manjiajk

Two months is still too fast to go from 175 mcg to 250 mcg.

What does he consider to be the more cost-effective tests? All the tests I mentioned are essential to get a full picture of the situation. And, as I said, he only has to look at those tests to see how well you are absorbing in the gut.

You also need to see FT4 and FT3 tested together to see how well you convert. Very often, people on such large doses of levo aren't converting very well, and it's the low FT3 that is causing the symptoms.

You can't cut corners with thyroid testing. That said, you don't need to do them that often. But, the full range of tests should be done at least once if you want to see where the problem lies. You can't really move forward until you've done that.

Manjiajk profile image
Manjiajk in reply to greygoose

So, these are my results from April. I would of had another lot done in May but the sample haemolised so I didnt have anything for my appointment. I'm due to have another set of tests done in the next few weeks.

Ferritin- 62.4 13-150

Folate- 15.44 3.89-19.45

Active B12 150 37.5- 187.5

Vit D 78.9 50-175

TSH 17.3 0.27-4.2

Free T3 3.5 3.1-6.8

Free thyroxine 15.6 12-22

greygoose profile image
greygoose in reply to Manjiajk

Your ferritin is not optimal. Not even mid-range. I would think that needs further investigation, a full iron panel.

Your vit D is a bit low, too. It would be better around 100.

Is that a typo? TSH 17.3? And that's on 250 mcg levo? How do you take your levo? do you take it on an empty stomach, leaving at least one hour before eating or drinking anything other than water? Do you take any other medication or supplements at the same time as your levo? Is your TSH always that high?

Your FT4 is low, as might be expected if that TSH is correct. But, your FT3 is far too low,

Manjiajk profile image
Manjiajk in reply to greygoose

This was on 150mcg and since my thyroxine has been increased. I have adenomyosis and cervical fibroids and have suffered with iron deficiency anaemia (although, not recently) and non-iron deficiency anaemia due to heavy periods so the ferritin level is actually really good for me. I'd probably still struggle to get it much higher without another monofer infusion but they wont do that as I'm in the normal range now. I was under hematology for years for this. They never found any other reason apart from my periods being the cause of the anaemia. I'm going to get more blood done in the next week or so. What's the optimal T3 level?

greygoose profile image
greygoose in reply to Manjiajk

Well, being hypo can be a very good reason for anaemia. Hypos are usually deficient in nutrients because they have low stomach acid, and therefore difficulty digesting food and absorbing nutrients.

So, are you supplementing vit D?

You didn't answer my question about the TSH. Nor about how you take levo. You may have been on 150 mcg levo at the time of those tests but a TSH of over 17 is much too high for someone on that dose. There is a problem somewhere.

Optimal FT3 is not a number. It should be wherever it needs to be to make you feel well. But, it's pretty obvious that no-one is going to feel well on an FT3 the level of yours. And, you still have symptoms. Optimal is when all your symptoms have gone.

Manjiajk profile image
Manjiajk in reply to greygoose

The TSH is correct. I take my levo in the morning about 1-2hrs before I eat. I take my iron in the evening. I also supplement with vit D. I've only just started to supplement Vit D again as I had been near to the top of the range so was advised to stop taking it for a while.

greygoose profile image
greygoose in reply to Manjiajk

OK, and do you take magnesium with your vit D? The two work together, so best to take them together. But, they need to be taken four hours away from thyroid hormone. You also need to take vit K2-MK7 with vit D, because taking vit D increases absorption of calcium from food, and the K2 makes sure it gets into the teeth and bones, and doesn't build up in the soft tissues.

Iron needs to be taken two hours away from everything, including food, except for vit C, which helps with absorption.

Have you ever tried taking vit C with your levo, to help absorption?

Have you ever had your stomach acid level tested? Have a read of this article and try the home test at the end. It could just be low stomach acid causing your problems.

healthygut.com/articles/3-t...

Manjiajk profile image
Manjiajk

I don't take Vit C, but one of the iron supplements I sometimes take has Vit C in. I will buy some to take. I do take magnesium though. I had a parasite infection that I picked up in Morrocco back in 2007. Although, it's gone, its left me with digestive issues. I cant tolerate sugar, starches or cows dairy. I still have low than normal good bacteria in my gut. So, do you think it could be this causing the problems?

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