Had dose reduced from 200mcg levothyroxine and 20mcg T3 to 25mcg levothyroxine because endo told me to start all over again to work out what my correct dose should be
Symptoms are pins and needles, hard stool with occasional overflow incontinence, heavy periods, tiredness, feeling cold, reduced stamina, puffy eyes, dark circles, hair loss.
Thanks for reading
On 25mcg levothyroxine
TSH 6.10 (0.2 - 4.2)
Free T4 12.1 (12 - 22)
Free T3 3.0 (3.1 - 6.8)
Written by
Lucie16
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It seems a bit drastic to start you on 25mcg of levo again. I haven't seen what your blood test results were before the reduction.
I will say that as both FT4 and FT3 are both at the bottom I do not know what this Endo is hoping to achieve.
We need our TSH to be 1 or below. We need both FT4 and FT3 to be towards the top of both ranges.
I would ask your GP to check the following:-
B12, Vit D, iron, ferritin and folate as deficiences in these can also cause disabling
symptoms.
Any tests you have for your thyroid hormones have to be at the very earliest possible, fasting (you can drink water) and allow a gap of 24 hours between your last dose of levothyroxine and the test and take afterwards.
Pins/needles are common in low B12. We should have all vitamins/minerals at optimum. If B12 is below 500 changes can occur in our spinal fluid. We, hypothyroiders, aim for a B12 of 1,000 to try to prevent neurological problems. Vit D also (B12 and Vit D are prohormones) is important as are the others - all to be optimum.
Always get a print-out of your results, with the ranges and post on a new question for comments.
I wouldn't be surprised if you've been on too low a dose of levothyroxine and I also think you will be able to add to your clinical symptoms on this link:-
Yes, both FT4 and FT3 were too high and so a reduction is sensible. To start at the beginning still seems drastic. I hope you don't feel too bad. I will add in SeasideSusie who is excellent with blood results.
OK, then your endo is a bit of a muppet, isn't he! You've just had a Hashi's 'hyper' swing - or a Hashi's flare as some call it.
Do you know how Hashi's works? Or, more to the point, does your end? Knowing you have high antibodies - and therefore Hashimoto's thyroiditis - he should have expected this to happen, at some point, and not slashed your dose like that, but told you not to take if for a while, until your levels go down naturally. Now, you've got to start all over again, building up your dose until your feel well again. So stupid!
My first thought is that your endo is a tool, but I am not well today so maybe I'm being grumpy!
My second thought is that you may very well have high antibodies. Have you had them tested? Do you have Hashimoto's?
And whoever is responsible for doing nothing about these results is a tool too!
Ferritin 11 (30 - 400)
Iron 5.6 (6.0 - 26.0)
Ferritin should be half way through it's range.
Due to your ferritin being so low, you need an iron panel, full blood count and haemoglobin test to see if you have iron deficiency anaemia. Did you have those done or just the Iron which has come back below range too. If you've had this done, please post the results, if not ask your GP to do them but I think it may very well be that you could have iron deficiency anaemia.
The usual treatment for low ferritin is 1 x ferrous fumarate once or twice daily and for iron deficiency anaemia it's 1 x ferrous fumarate two or three times daily.
Ideally you could do with an iron infusion as your ferritin is below range. You could ask for one as this will raise your level within 24-48 hours whereas the tablets will take months. If your GP insists on tablets, then I think you will need the maximum.
Take each iron tablet with 1000mg Vitamin C to aid absorption and help prevent constipaton. Always take iron 4 hours away from thyroid meds and two hours away from other medication and supplements as it will affect absorption.
Ferritin needs to be half way through it's range.
Eating liver regularly will help, maximum 200g per week due to it's high Vit A content, and including lots of iron rich foods in your diet will help too apjcn.nhri.org.tw/server/in...
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Folate 4.2 (4.6 - 18.7)
Vitamin B12 201 (190 - 900)
You are folate deficient wih very low B12. Do you have any signs of B12 deficiency b12deficiency.info/signs-an... If so please post on the Pernicious Anaemia Society forum for further advice. Post these results, any signs of deficiency, and ferritin/iron information healthunlocked.com/pasoc
If you don't have signs of B12 deficiency then you really need to raise your B12 level by supplementing.
I have read (but not researched so don't have links) that BCSH, UKNEQAS and NICE guidelines recommend:
"In the presence of discordance between test results and strong clinical features of deficiency, treatment should not be delayed to avoid neurological impairment."
And an extract from the book, "Could it be B12?" by Sally M. Pacholok:
"We believe that the 'normal' serum B12 threshold needs to be raised from 200 pg/ml to at least 450 pg/ml because deficiencies begin to appear in the cerebrospinal fluid below 550".
"For brain and nervous system health and prevention of disease in older adults, serum B12 levels should be maintained near or above 1000 pg/ml."
That's good enough for me and I keep mine around 1000. Sublingual methylcobalamin lozenges are what's needed to supplement B12 yourself along with a good B Complex to balance all the B vitamins.
Your GP should be prescribing folic acid for the folate deficiency and, depending on what the PA forum advises, maybe you need B12 injections.
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Total 25 OH vitamin D 26.6 (25 - 50 deficient)
Taking 800iu D3 only
Well, 800iu D3 isn't going to ever raise your level. It is hardly a maintenance dose for someone with a reasonable level.
The recommended level is 100-150nmol/L according to the Vit D Council.
Treat for vitamin D deficiency if serum 25-hydroxyvitamin D (25[OH]D) levels are less than 30 nmol/L.
For the treatment of vitamin D deficiency, the recommended treatment is based on fixed loading doses of vitamin D (up to a total of about 300,000 international units [IU]) given either as weekly or daily split doses, followed by lifelong maintenance treatment of about 800 IU a day. Higher doses of up to 2000 IU a day, occasionally up to 4000 IU a day, may be used for certain groups of people, for example those with malabsorption disorders. Several treatment regimens are available, including 50,000 IU once a week for 6 weeks (300,000 IU in total), 20,000 IU twice a week for 7 weeks (280,000 IU in total), or 4000 IU daily for 10 weeks (280,000 IU in total)."
Each Health Authority has their own guidelines but they will be very similar. Go and see your GP and ask that he treats you according to the guidelines and prescribes the loading doses. Once these have been completed you will need a reduced amount to bring your level up to what's recommended by the Vit D Council and then you'll need a sensible maintenance dose which may be 2000iu daily, it's trial and error so it's recommended to retest once or twice a year to keep within the recommended range. You can do this with a private fingerprick blood spot test with City Assays vitamindtest.org.uk/
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Please let us know what your GP says and prescribes.
Lucie - as Marz has mentioned you have autoimmune thyroid disease aka Hashimoto's which is where antibodies attack the thyroid and gradually destroy it.
The antibody attacks cause fluctuations in symptoms and test results. When the antibodies attack, the dying cells dump a load of thyroid hormone into the blood and this can cause TSH to become suppressed and Free T4 and Free T3 to be very high or over range. You may get symptoms of being overmedicated (hyper type symptoms) to go along with these results that look as though you are overmedicated. Unless a GP or Endo knows about Hashi's and these hyper swings, then they panic and reduce or stop your thyroid meds.
The hyper swings are temporary, and eventually things go back to normal. Test results settle back down and hypo symptoms may return. Thyroid meds should then be adjusted again, increased until you are stable again.
So it sounds very much as though you may have had a Hashi's flare and it sent your test results haywire (maybe you had hyper type symptoms), your Endo panicked and reduced your meds. Your results show that you desperately need your meds increased again so go and see your GP or contact the Endo and ask for an increase in dose.
The aim of a treated hypo patient generally is for TSH to be 1 or below or wherever it is needed for FT4 and FT3 to be in the upper part of their respective reference ranges when on Levo only. Add T3 into the mix and TSH may well be suppressed, FT4 can lower and FT3 should be nearer the top of it's range.
When starting out on T3 I knew I had gone over but was due a test before appointment so went anyway. He told me, from. Emory so might not have got it spot on now but told me to take nothing for 3 days then half dose so 1.5 for 10 days and then increase to 1.75 and his advice was spot on. A decent Endo should be able to do that for you though I'm one of the 10% with no antibodies so it is easier to work out the best thing to do.
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