Self medicating. Next step decision pending... - Thyroid UK

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Self medicating. Next step decision pending...

Windsinger profile image
23 Replies

Hi everyone. Would you please have a look at my latest blood tests and make suggestions on my next step. After reading so much here about struggles people go through with the system I decided to self medicate and safe my precious energy, which is in deficit, by not fighting against NHS and just making my own way through my labs and medication.

After 6 weeks on 50mcg of levo here are my results.Followed by results from 6 weeks ago on 25mcg of levo...

TSH 0.221 ( 0.27-4.2) , 6 week ago 0.85

FT4 17.1 ( 12-22), 6 weeks ago 13.8

FT3 4.8 ( 3.1-6.8) , 6 weeks ago 4.5

So my TSH dropped significantely, FT4 went up from 20% through the range to 51% through the range, but T3 only from 37 to 45% through the range, much less of a jump... Does it mean I am not converting very well?

Should I just increase my levo to 75mcg or try T3 or NDT? I am feeling much better then before I started levo in April 2019. But I think there is still room for improvement. I have felt tiered and unmotivated for so long, I do not remember how it feels otherwise.

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23 Replies
Judithdalston profile image
Judithdalston

Have you tested ferritin, folate, vit d, b12? Just that low nutrients can hinder conversion...do you know if you have autoimmune antibodies (Hashimoto’s), frequently characterised by poor gut absorption?

Windsinger profile image
Windsinger in reply to Judithdalston

Thank you, Judithdalston. Yes all the above were tested at different times over the last year and all good. I have high TG antibodies. Endo said it means nothing, but I guess it is Hashi... Taking Selenium, Mag Malate, dessicated liver tablets for iron, betain chloride for stomach acid. Do not take D3, it was in the 90ies few months ago. Thinking of adding another 25 of Levo and then retesting again.

Judithdalston profile image
Judithdalston in reply to Windsinger

Ok. Yes you have ‘room’ to raise your levo.25 mcg, but remember if you have Hashimoto’s then bloods might be up/down somewhat regardless

of your careful levo. dosing! So be patient and not chop and change en Rey 6 weeks.

NWA6 profile image
NWA6

Hi wingsinger. I wouldn’t jump straight to alternatives yet, even though your T3 hasn’t really made any significant jump but better to be cautious and find the right spot. I’ve had Hyper symtoms and they’re just as bad of not worse than Hypo 😬 it’s only been 6wks but as it has been 6wks I’d try another 25mcg and retest in 6wks. Also making sure all those vitamins and minerals are optimal too. You should see your FT4 result raised after the next increase and only then will you see if your FT3 is still low. And then I’d consider adding T3.

It’s funny how we’re all different. My FT3 was always low, never got into the 4’s, I added T3 a few weeks ago and it rose to 4.8 and FT4 16 and honestly I feel fabulous. I’ve just added another 5mcg as I still had a couple of symptoms so maybe my FT3 might be in the 5’s at the next blood test but if i had to have my FT3 stay at 4.8, I’d have put up with a couple of minor symtoms. At yet with your FT3 you’re really feeling symptomatic. And this is why we can’t rely on numbers and ranges!

Keep going to you feel improvement and benefit and stuff the numbers, esp TSH! #downwithTSH! 😂

Windsinger profile image
Windsinger in reply to NWA6

Thank you Paula for your advice. I think I will do just that. Do not get me wrong, arriving at these numbers definitely made a big difference to the way I feel. I do not want to jump off the bridge anymore and can get through the day with no problems. Still waiting for this amazing feeling of looking forward to springing out of bed and being excited about the day, living my life, which I remember from before times. May be I am just getting old, as my GP hinted. Menopause and all... I am not buying into it though😊. I know my real me is still there.

NWA6 profile image
NWA6 in reply to Windsinger

That’s a good step forward 🤗 And you are right to want more. I hate when GP’s state age, menopause and even Fibromyalgia, I’ve had all these thrown in my face (with great big sighs and body language that suggests the GP thinks I’m a nuisance and probably mentally unstable 😩)

Windsinger profile image
Windsinger in reply to NWA6

Yep, all these... Hence self medicating. I have no energy to fight the system... I just want to be well. :) Thank you for your support. Be well :)

Steni profile image
Steni

Great post - thank you. I learnt the hard way about taking time to get this right , adding T3 has helped me enormously but like you I’m still not quite there. Onwards and upwards!

radd profile image
radd

Windsinger

It is too early to start switching meds as given all the systems and mechanisms within the body that are effected, replacement hormone meds can take much longer to reach their full potential.

It would be better to increase Levo a little and work on getting it performing better by providing cofactors that encourage better conversion, such as supplementing selenium and reducing your high thyroid antibody count.

Also, optimising iron and important nutrients such as VitB12, folate, and VitD. Have you had these tested?

Your results show you have room to increase Levo dose by another 25mcg. This will take TSH much lower and you may then be losing a small amount of its conversion ability but hopefully by improving conditions above, conversion in organs and peripheral tissue will improve enough to offset the shortfall. Many function at their best with a low TSH as it is a balance of how much working thyroid gland you have left and your bodies converting abilities. Retest in six weeks and post results.

.

The Important Role of Supplements

thyroiduk.org.uk/tuk/treatm...

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The Thyroid/Gluten Connection

chriskresser.com/the-gluten...

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Supplementing Selenium

thyroidpharmacist.com/artic...

Windsinger profile image
Windsinger in reply to radd

Ah, I can see it now. Thank you Radd. :)

I take Selenium ( methilated), magnesium malate, vit K2 ( having a break from D3 for now), my folate level is good and B12 was too high on the last test. Transferrin saturation was a bit over the top, so I am donating blood now. Please see results I posted in my reply to Silverfox below.

I have been Gluten free for the last 15 years. I am on quite low carb now ( 30-50g of carbs daily)

Tried LDN to deal with autoimmunity for 6 months, but do not feel anything, whatsoever... Really disappointing, as there are so many good reports...AG antibodies did not shift at all...Around 500kU/L ( norm less then 115)... My C reactive protein is good though 0.25 mg/L ( less then 5 is good). So not much inflammation in my body. High cholesterol but very good ratio of HDL/LDL.

So I will up my Levo to 75 and be back in 6 weeks time :)

Thank you! Never thought one can be so excited about taking meds :) x

radd profile image
radd in reply to Windsinger

Windsinger

I too have to donate blood. Beware that enforced donation can lower all other nutrients as well as serum iron. 😕

LDN works well for some. T helper 17 cells (TH17) are a subset of T helper cells producing interleukin 17 (IL-17) which become over activated in Hashi, a consequence of imbalanced TH-1 & TH- 2 cytokines. The success of LDN depends on which way your dominance is. LDN didn't work for me either but curcumin & resveratrol has.

.

kirbyknoxmd.com/combined-re...

Windsinger profile image
Windsinger in reply to radd

Thank you Radd. I have been trying to get my head around all these THelper cells and get confused. Could not work out where do I belong to. Just know however much of LDN I take 0.5 or 4.5 ml I feel literally nothing, no mood enhancement, no dreams, no headaches...strange... Do you know how to find out where is an imbalance, th2 or th1?

silverfox7 profile image
silverfox7

I think the main thing at the moment you are making progress. I found getting my vits etc optimal made a huge difference so have you any readings you can post for Vit D, B12, folate and ferritin? I was very low in Vit D and folate but after supplementing for 5 months I reversed my conversion issues. Obviously the time depends on levels and also be aware if you need to supplement then its generally for life but you may be able to find a maintenance dose once you are optimal. It's made a huge difference though so well worth the effort. I then changed over to NDT. I have started my thyroid journey over 30 years ago with NDT and felt good on it but a strike left me without for several months so I went over to Levo and was good on that as well but more recent years that hasn't been the case triggered I think by the menopause so a rough few years made me think about NDT again. I also read though that if vitamins and minerals aren't optimal then sometimes it is difficult for some to make the switch so I got that sorted first and then made the switch things along the lines that if things dipped again then I had a cushion of T3 to help. The best thing for me though has been getting optimal levels of those four because it helps General well being as well and can lessen or even negate some symptoms that are down to insufficient vitamin etc levels.

At the moment though I would concentrate on what you are doing and learn more about how your body reacts and how you are feeling. Once on the correct dose for you then you may well be symptom free so keep posting your results for comments as you go along. Many don't have any problems so aren't on here but out enjoying life!

Windsinger profile image
Windsinger in reply to silverfox7

Thank you, Silverfox. It is very reassuring to hear from a more experienced and knowledgeable members. Here are my vit levels from about 3 months ago. B12 and D seem to be high, so is Transferrin saturation. At the time I was taking B complex and D3 high dose ( 10 000 IU daily, as recommended by some other group) , but stopped it now. May be start again at lower dose?

Transferrin Saturation 50.27% ( range 20-50%)

Magnesium 0.91 ( range 0.66 - 1.07mmol/L)

Vitamin D (25 OH) 96 ( range Deficient <30nmol/L; Insufficient 30 - 50; Consider reducing dose>175)

Vitamin B12H 929 ( range Deficient <145pmol/LInsufficient 145 - 250Consider reducing dose >569Serum)

Folate >45 ( range 8.83 - 60.8nmol/L)

I guess would be good to retest it now... I will. Thanks again:) x

SeasideSusie profile image
SeasideSusieRemembering

Windsinger

FT4 17.1 ( 12-22), 6 weeks ago 13.8

FT4 now 51% through range, 6 weeks ago it was 18% through range

FT3 4.8 ( 3.1-6.8) , 6 weeks ago 4.5

FT3 now 45.95% through range, 6 weeks ago 37.84% through range

So your FT3 has actually made quite a decent improvement

FT4 = 51%, FT3 = 45.95% - they are quite well balanced.

Even though your TSH is 0.221, there is plenty of room for an increase in your Levo according to your FT4, and as your conversion seems to be reasonably good your FT3 should rise as well as FT4.

Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine (the magazine for doctors):

"The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l. In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l. Most patients will feel well in that circumstance. But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l. This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l).*"

*He recently confirmed, during a public meeting, that this applies to Free T3 as well as Total T3. You can obtain a copy of the article by emailing Dionne at

tukadmin@thyroiduk.org

The information is in answer to question 6.

Windsinger profile image
Windsinger in reply to SeasideSusie

Brilliant information. Thank you so much. Now, one more little question. It's it ok to take two different brands of Levo? 50 mercury and 25 wockhart?

SeasideSusie profile image
SeasideSusieRemembering in reply to Windsinger

Some people can take any brand of Levo and have no problems.

Some people find they react to fillers in one brand or another.

Generally it's advised, to avoid any kind of problem (which can lead to not really knowing what causes it), is to stick to one brand that you know suits you. For example, if you are taking 50mcg Mercury and have your dose increased to 75mcg, instead of having a different brand of 25mcg dose, either half a 50mcg and take 1 and 1/2 daily to give 75mcg, or alternate 100/50 to give 75mcg.

Windsinger profile image
Windsinger in reply to SeasideSusie

Great. Thank you. That's what I will do. Speak in 6 weeks 😊

silverfox7 profile image
silverfox7

As SeasideSusue says readings are increasing well. One general comment triggered m by your D comment. If we need to supplement then it's usually for life. Once you stop, things can drop quickly. We need to supplement as thyroid patients lose vits and mins rapidly and supplementing doesn't stop this happening but we may find, when optimal, we can find a maintenance dose to keep it there. That will be trial and error on your part. I've also seen recommendations for Vit D to be 125 or even higher so as you have now stopped I would test that or even increase first as you know you were under that level when you stopped so start again now and test later. Well done on inceasing your FT3 readings though!

vocalEK profile image
vocalEK in reply to silverfox7

What does that translate to in ng/mL? I've managed to raise mine to 57.

vocalEK profile image
vocalEK in reply to silverfox7

Just found this converter. According to it, I'm in good shape now. My number was only 29 two years ago (before supplementing). vitamindservice.com/node/91

Windsinger profile image
Windsinger in reply to silverfox7

Thank you, Silverfox7. Vit D is a tricky one for me, as at the level of 96 I developed skin condition called granuloma annulate. Rosacea is another one which does not like too much D. Unfortunately it is not as innocent as it seems. Now off D and it is almost gone. So I am following Magnesium protocol for balancing vits and minerals. It involves less supplements and more real foods like bee pollen for B vits, acerolla for vitC with co factors, liver for iron and copper, dark greens for magnesium plus magnesium supps. Thank you for the note of caution though. 😊

silverfox7 profile image
silverfox7

Not heard of that before! Thank you for letting me know!

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