I’ve posted a lot on my ongoing struggle with fatigue and muscle problems I have b12 deficiency now injecting, vitamin D deficiency now corrected, low normal levels of folate, ferritin. I’ve been given pancreatic enzymes as they are low, taking daily iron.
I’ve just checked my recent thyroid panel and my tsh is slightly over range again my t3 bumps along the bottom of the range all the time.
when my gp trialled levothyroxine at my request I felt terrible even more exhausted and unwell so I stopped.
I have read since that low ferritin means you can’t use the thyroxine properly, does that make sense? At what level does ferritin need to be for that to function
also as my t3 is lower in range than my t4 do I need t3 as well and how do I go about getting that?
I wondered about getting the genetic test done as my mum, sister and niece all have hypothyroidism and are treated and feel better.
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Mag999
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Yes, it makes sense that if you have nutritional deficiencies, your body will not be able to use thyroid hormone correctly. How long did you stay on levo? It's not an instant cure, and you'd have to give it months to see if it was going to help, with several increases in dose. Obviously, the starter dose would not be enough to do anything much, but you have to start low and increase slowly with hormones.
When the thyroid gland is failing, for whatever reason, it often makes more T3 and less T4 to keep the essential FT3 level up. T3 is the active hormone, needed by every single cell in your body. T4 is basically a storage hormone that doesn't do very much until it is converted into T3. So, at the point at which you are at, it's impossible to tell if you will eventually need T3 or not. It could be that you'd be perfectly fine on T4 only, once you got onto the right dose. But before trying again, it would be better if you could optimise your nutrients so that the levo 'works' better.
Now your vitamin levels are optimal you need to retry levothyroxine
Levothyroxine isn’t an instant fix, it’s very common to initially feel worse. Bloods should be retested 6-8 weeks after each dose change or brand change in levothyroxine
Standard starter dose of levothyroxine is 50mcg
You may find it better to split the dose waking and mid afternoon. Can make it easier to tolerate
Which brand of levothyroxine have you tried
Many people find they can’t tolerate certain brands
Presumably you have autoimmune thyroid disease?
Hashimoto’s, diagnosed by high thyroid antibodies
Are you on lactose free diet or gluten free diet
It typically takes 6-12 months to get dose slowly increased up until on full replacement dose
Bloods should be retested 6-8 weeks after each dose increase
Test thyroid levels early morning, ideally before 9am and last dose levothyroxine 24 hours before test
In the majority of patients 50-100 μg thyroxine can be used as the starting dose. Alterations in dose are achieved by using 25-50 μg increments and adequacy of the new dose can be confirmed by repeat measurement of TSH after 2-3 months.
The majority of patients will be clinically euthyroid with a ‘normal’ TSH and having thyroxine replacement in the range 75-150 μg/day (1.6ug/Kg on average).
The recommended approach is to titrate thyroxine therapy against the TSH concentration whilst assessing clinical well-being. The target is a serum TSH within the reference range.
……The primary target of thyroxine replacement therapy is to make the patient feel well and to achieve a serum TSH that is within the reference range. The corresponding FT4 will be within or slightly above its reference range.
The minimum period to achieve stable concentrations after a change in dose of thyroxine is two months and thyroid function tests should not normally be requested before this period has elapsed.
when my gp trialled levothyroxine at my request I felt terrible even more exhausted and unwell so I stopped.
How much levo were you taking?
50mcg perhaps!
That is just the starting dose
How long did you take the dose before stopping it?
Sometimes when adding/ increasing thyroid hormone we feel worse before we feel better.....this may have been your problem! This is caused by the body adjusting to the change.
It takes 6/8 weeks, or longer, for the body to adjust to a new dose
If that dose is insufficient then symptoms will return and a further increase may be required
Your GP should have explained this....but I don't suppose he knows!
Did he do another test 6/8 weeks after initiating levo treatment?
What you appear to need is an effective dose of replacement T4/ levothyroxine.
You certainly don't need T3 right now.
Neither do you need a Dio2 thyroid genetic test...as above your conversion ppears to be fine
If thing change somewhere later on ( unlikely) that would be soon enough to consider the Dio2 test
You do need to ensure you optimise vit D, vit B12, folate and ferritin....all support thyroid function
Ferritin is a protein that stores iron and releases iron when the body needs it....this link will help
Your GP hasn't been helping you ( aka clueless!) and possibly only looks at TSH...he should know better but sadly medics are not well educated in matters thyroid.
You need to resume levo treatment, this will take some time to resolve and you may not feel great until you reach your correct dose.
As your T4/T4 rises so ( by adequate conversion) will your FT3
As your hormone levels rise your TSH will begin to fall.
I need high dose T3-only so have done the hard yards!
T3 is not the panacea of all ills, it is a powerful hormone and needs to be used with respect and understanding.
Speak to your GP again and ensure you re tested 6/8 weeks after any dose increase.
Your body will tell you when you are close to your therapeutic dose....you will feel better!!
It will take time and you may sometimes feel rubbish bt you need to stick with the medication
Please keep us posted, members will pick up on any anomalies in your new tests, should they rise. and will advise.
Meantime ask as many questions as you feel you need answers to
Thanks for your reply, I just keep being told I’m not hypo yet but will probably be because of family history and borderline results. If I show my gp those results she will say they are in range, I will try and explain the subtleties and see if she will let me try again on higher starting dose and I will try and stick with it. I need to get my iron stores and vit bs and d up more as I really felt too ill to stick with it last time, ended up in bed muscle pain nausea etc which improved when I stopped. I have those symptoms all the time anyway but was so much worse.
Just out of interest I also have no hormones due to premature ovarian failure untreated then ovaries removed last year. I can’t take hrt as I seem to overreact to it, suicidal on progesterone and bloated and bleeding on oestrogen although I have been advised to try again at low dose as I have osteoporosis and fractures. I’m assuming there may be a relationship between thyroid hormones and sex hormones but again the information is confusing. A lot of the hormone deficiency symptoms seem to be similar.
Could correcting the thyroid be enough or would I also need to try hrt as well.
I feel like all my body’s systems are run down and I have to take tablets to compensate. My bathroom cupboard isn’t big enough!
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