Struggling again: Hi After a few months of... - Thyroid UK

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Struggling again

jodary profile image
19 Replies

Hi

After a few months of feeling relatively ok and booking a 5 week cruise for February I am now struggling again and doubting I will be able to go . I haven’t said anything to my husband yet and that’s making me very anxious . I always sufffer badly with anxiety and I think it’s when my T3 is low .

latest results medichecks

Tsh. 0.236. Range. 0.27 - 4. 2

T4. 20.7. Range. 12-22

T3 3.8. Range 3.1 - 6.8

Vit D 42.3. Range 50-250

Folate 14. Range >7

Vit B12 84.3. Range 37.5. - 188

Ferritin 109. Range 30-650

My Vit D has plummeted again and I struggle with the supplement as they upset my stomach . I can see I have a conversion problem and am on a gluten free diet . Test done at 8.50 fasting . Does anyone think that to help in the short term before I go away I could increase from my 100mcg current dose in an effort to boost T3 ? I felt much better when I got it up over 5 . I am seen by a haematologist for a blood related condition and they said I didn’t need a folate supplement as their blood tests which I don’t see are satisfactory and I am not anaemia . I am a bit afraid to take one against this advice but feeling really rubbish and very anxious .

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19 Replies
seveneleven profile image
seveneleven

Have you looked into adding T3? You're really not converting at all, and that might be the only way to get your T3 properly up where you feel well again. Your T4 is already at the top of the range, so increasing levo would likely push it over range, and you might find you feel even worse. Your folate isn't high but also not dire either, so I doubt that's the culprit of problems. Vit D wise, have you used a spray or sublingual drops? D is generally poorly absorbed through the gut, and oral/sublingual is more effective. I use the BetterYou D3+K2 spray and that's worked well.

jodary profile image
jodary in reply to seveneleven

Hi thanks for reply . I have been hypothyroid for 40 years . I have seen private endos and repeated gps and no one would admit there was a problem or give me T3 . I am not confident to do it myself wouldn’t know where to start . And having another chronic condition now doesn’t help as am taking chemo tablets and struggling with them as well . Am in a sorry state !

seveneleven profile image
seveneleven in reply to jodary

Have you seen a private endo or GP recently/one from the TUK list? Usually they're open to T3 when there's clear evidence you're not doing well on T4 alone and have been on it for so long. A lot of endos are not clued up on thyroids. The private doc I see gave me T3 after 2 months on levo because I couldn't convert at all and was getting more unwell. There's a lot of advice and support here and elsewhere about adding T3, with the gist being you start very very low and go slowly according to tolerance. Sorry you're having such a rough time with everything!

jodary profile image
jodary in reply to seveneleven

Hi thanks for replying . I did get my T3 up a couple of years ago on T4 only . I was taking 125 daily but my tsh was very low and stupidly I reduced it back to 100

Tsh Was 0.09 Range 0.27 -4.2

T4 was 22.8 Range 12-22

T3 was 5.05 Range was 3.1 - 6.8

As everywhere gp is totally disinterested and will now only do tsh previous years my gp would say if on medication you needed T4 result as well which as we know is not the most important one hence I do medichecks . My thinking is that 4 weeks of a dose increase might help me feel better before this cruise . I can’t tell my husband I don’t want to go and anything I do will have to be without any help from gp I have sent for a vit d spray The Caribbean should help that if I’m lucky x

seveneleven profile image
seveneleven in reply to jodary

It could be something as simple as increased stress and the difficulty of other new conditions that has worsened your conversion. With your T4 level so close to top of the range, it might not be wise to increase by as much as 25mcg, but maybe you could try upping by 12.5 to 112.5 for a couple of weeks and see how you feel? Would just want to watch out for any symptoms of excess like rapid heart rate or changes in blood pressure.

jodary profile image
jodary in reply to seveneleven

Yes that’s a good idea although I think it’s been mentioned on here that you can’t get over medicated symptoms unless you have too high T3 ?

seveneleven profile image
seveneleven in reply to jodary

Not necessarily - you can get symptoms if your T4 goes too high because excess T4 can be toxic for the body.

jodary profile image
jodary in reply to seveneleven

Thanks for that x

jodary profile image
jodary in reply to seveneleven

Hi

I just wondered why no one else has replied to me . I can’t see my post but you saw it and replied. It’s just upset me a bit to not get any other advice yet you saw the post yesterday .

seveneleven profile image
seveneleven in reply to jodary

Not sure sorry - sometimes there's just a large volume of posts on a given day and things aren't seen by many. To be honest though I'm not sure what else could be offered - your issues seem to be, as you say, from not enough T3, so you need more T3 in your system, either from a slight levo increase or from taking T3 directly. Doing that small levo increase and adding D3 drops/spray is something you can start now, and hopefully that will help you along.

jodary profile image
jodary in reply to seveneleven

Ok thank you . I have started that . Maybe people like slow dragon think I am too complex . I get that with gp . If you have more than one issue x

TiggerMe profile image
TiggerMe in reply to jodary

We've not needed to chip in as seveneleven has covered everything rather brilliantly! Often people get multiple replies as we spot different things to comment on or are replying at the same time, the Caribbean will be a tonic and boost your flagging Vit D 😎

If you think you have time you could contact Roseway for a private consultation and get a private prescription of T3 with those results 🤗

SlowDragon profile image
SlowDragonAdministrator

Test done at 8.50 fasting .

Was last dose Levo 24 hours before test

Which brand and do you always get same brand at each prescription

Vitamin D

Have you tried mouth spray, as it avoids gut issues

Vitamin D mouth spray by Better You is very effective as it avoids poor gut function.

There’s a version made that also contains vitamin K2 Mk7.

One spray = 1000iu

amazon.co.uk/BetterYou-Dlux...

It’s trial and error what dose we need, with thyroid issues we frequently need higher dose than average

suggest you try 3 sprays per day

Retest in 2 months

You may need higher dose

Web links about taking important cofactors - magnesium and Vit K2-MK7

Magnesium best taken in the afternoon or evening, but must be four hours away from levothyroxine

betterbones.com/bone-nutrit...

medicalnewstoday.com/articl...

livescience.com/61866-magne...

sciencedaily.com/releases/2...

Interesting article by Dr Malcolm Kendrick on magnesium

drmalcolmkendrick.org/categ...

Vitamin K2 mk7

betterbones.com/bone-nutrit...

healthline.com/nutrition/vi...

Personally I would consider starting a vitamin B complex 2-3 weeks after starting vitamin D

B vitamins best taken after breakfast

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 currently difficult to find at reasonable price, should be around £20-£25. iherb.com often have in stock. Or try ebay

Igennus B complex popular option too. Nice small tablets. Most people only find they need one per day. But a few people find it’s not high enough dose

Post discussing different B complex

healthunlocked.com/thyroidu...

IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before ALL BLOOD TESTS , as biotin can falsely affect test results

endo.confex.com/endo/2016en...

endocrinenews.endocrine.org...

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) and continue separate B12

Post discussing how biotin can affect test results

healthunlocked.com/thyroidu...

helvella.blogspot.com/p/hel...

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 who will prescribe T3

Ideally choose an endocrinologist to see privately initially and who also does NHS consultations

thyroiduk.org/contact-us/ge...

jodary profile image
jodary in reply to SlowDragon

Thank you for replying . Yes I do my tests this way as with medichecks it is easy to get it done at 8am without having to try to get an early appointment at surgery . I have started the vit d spray and will start the small increase . Could you just advise what you think of my folate and ferritin ? Im not anaemic and I know folate will improve with B complex but what about ferritin and B12 ? Are they not too bad ?

SlowDragon profile image
SlowDragonAdministrator in reply to jodary

B12 is over 70. So ok but taking vitamin B complex will help improve to over 100

Ferritin looks good

Though it can be high due to inflammation. Iron can be low

Worth doing an iron panel every couple of years

Test early morning, only water to drink between waking and test. Avoid high iron rich dinner night before test

Medichecks iron panel test

medichecks.com/products/iro...

jodary profile image
jodary in reply to SlowDragon

I wondered about ferritin as it’s 109 and the range is 30-650. My red blood cells are low but my haematologist said it’s irrelevant as Haemoglobin is fine .

SlowDragon profile image
SlowDragonAdministrator in reply to jodary

So look at getting full iron panel

Low RBC count can be due to low B12 or folate

nhs.uk/conditions/red-blood...

So I would perhaps not test until been on vitamin B complex 6 weeks

Updated reference ranges for top of ferritin range depending upon age

healthunlocked.com/thyroidu...

Thank you for your incredible patience while you have been awaiting the outcome of our ferritin reference range review. We conducted this with Inuvi lab, which has now changed the reference ranges to the following:

Females 18 ≤ age < 40

30 to 180

Females 40 ≤ age < 50

30 to 207

Females 50 ≤ age < 60

30 to 264

Females Age ≥ 60

30 to 332

Males 18 ≤ age < 40

30 to 442

Males Age ≥ 40

30 to 518

The lower limits of 30 are by the NICE threshold of <30 for iron deficiency. Our review of Medichecks data has determined the upper limits. This retrospective study used a large dataset of blood test results from 25,425 healthy participants aged 18 to 97 over seven years. This is the most extensive study on ferritin reference ranges, and we hope to achieve journal publication so that these ranges can be applied more widely.

jodary profile image
jodary in reply to SlowDragon

Thank you very much appreciated

SlowDragon profile image
SlowDragonAdministrator

Does anyone think that to help in the short term before I go away I could increase from my 100mcg current dose in an effort to boost T3 ?

Why not try increase to 112.5mcg 4 days a week

Cut 25mcg in half

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