Medichecks results after 6 weeks on higher dose of Levo - need advice please!

[Smorzando]

Hello, I hope someone might be able to help me out here!

I found out in January of this year that I have Hashimoto's, through doing a Blue Horizon test. My results at that time were:

TSH 11 (0.27-4.20)

FT4 15.7 (12.0-22.0) 37% through range

FT3 4.96 (3.1-6.8) 48.65% through range

TPO antibodies >600 (<34)

TGab 47 (<115)

Ferritin 9.3 (13-150

B12 479 pmol/l (no range given as such)

Vit D 60nmol/l (no range given as such)

Folate 16.70 (8.83-60.8)

My GP agreed to start me on Levothyroxine (although she was keen to point out that my FT4 and FT3 were within range). I took 25mcg for one week, then increased to 50mcg. After 6 weeks, a blood test at the GP surgery showed a TSH of 3.32 (0.35-5.0) and a FT4 of 13.8 (9.0-21.0 - 40% through range). I had a bit of saga contacting my GP as Covid was kicking off around then, but on the 23rd March I persuaded her (it wasn't easy!) to prescribe me enough Levo to increase to 75mcg per day and then, "in my own time", to increase further to 100mcg, which I did after feeling no benefit from the 75mcg after 6 weeks.

Sorry if this is long winded, I'm trying to give as much info as I can!

Anyway, after increasing to 100mcg a day for 6 weeks, I have just done a full Medichecks panel and the results are:

TSH 1.48 (0.27-4.2)

FT4 21 (12-22) 90% through range

FT3 4.21 (3.1-6.8) 30% through range

Ferritin 47.8 (13-150)

B12 (Active) 129 (>37.5)

Folate 11.22 (>3.98)

Vit D 90.4 (50-175)

TPO antibodies 503 (<34)

TG ab 24.4 (<115)

So: to my question(s)!

I'm really flummoxed by this. T4 is right at the top of range, so any increase in Levo will take me over range and freak out my GP. I'm also surprised that the TSH is as high as it is, given such a high T4. Clearly, I am not converting well to FT3 and this probably explains why , to be honest, I am really not feeling much better at all since starting treatment. I have been supplementing iron, B vits (Igennus Super B, 1 per day) and Vit D (Better You spray, 3000IU per day) along with K2 and magnesium.

I would be extremely grateful if anyone could give me some advice as to where to go from here, as I can't figure it out at all. I am extremely reluctant to share these results with my GP at present, as I am virtually certain she will proclaim my results to be perfect, and suggest that my symptoms are due to another reason.

Many thanks for reading!

[SeasideSusie Remembering]

Smorzando

Ferritin 9.3 (13-150)

I have been supplementing iron

What did your GP say about your below range ferritin?

Was an iron panel and full blood count done?

Is the iron prescribed?

Do you take your iron tablets with Vit C?

Do you take your iron tablets 4 hours away from your Levo and 2 hours away from other supplements?

As you have Hashi's (which does complicate things), are you gluten free which has helped some Hashi's patients? Are you taking selenium which can help with conversion and is supposed to help reduce antibodies?

Your nutrients are most improved but ferritin is still on the low side and would be better half way through range (82 with that range).

[Smorzando in reply to SeasideSusie]

Thank you for your reply.

Regarding the ferritin, my GP asked about heavy periods - this is something I've experience in the last two years or so and they are very heavy indeed, also my cycle was shortening so on a couple of occasions I was having a period every 14 days. I am also a non meat eater. Anyway, yes, I believe a full blood count was done but I have had so little contact with the surgery recently I don't know the results.

Yes, the iron was prescribed - Ferrous fumerate - but it was prescribed before the full blood count was done. To be completely frank I am extremely anxious about making any contact with the surgery at the moment as last time it was very stressful.

I am not gluten free, no. I have actually tried this in the past (about 6 years ago?) - very strictly for 3 months and no benefit. I was not diagnosed Hashi's back then but my TSH was well over 3 so probably early hypo. I have also had a test for celiac (negative).

Edited again, terrible memory(!) - I have started taking selenium in the last couple of days.

[SeasideSusie Remembering in reply to Smorzando]

Smorzando

I asked about the full blood count and iron panel because low ferritin can suggest iron deficiency (shown by iron panel) or anaemia (shown by full blood count). Ferritin can also be low without iron deficiency. But if your iron tablets are prescribed then one has to assume the GP has done all the tests and is satisfied that by prescribing iron then it wont take your serum iron over range.

[Smorzando in reply to SeasideSusie]

I never 'assume' anything, when it comes to doctors! 😆 so I'm sure it is worth me checking, if I can pluck up the courage to contact them.

[SeasideSusie Remembering in reply to Smorzando]

I agree. I was very unwell for 3 months before Christmas, kept having emergency appointments, blood test on leaving every one, kept being told they were normal. When I eventually got a print out I could see that my full blood count was showing both neurophils and lymphocytes increased from my normal of low in range to very close to the top of range and if these are high it indicates a bacterial infection. I'd said all along I felt like I had an infection, with temperature reaching 99.4F, I also said I thought it was bacterial as I always get a rash with a viral infection and I had no rash. All was ignored and I was told everything was normal regardless of my symptoms and how ill I felt. So yes, always check and get print outs of all results, if necessary challenge them.

[Smorzando in reply to SeasideSusie]

I'm sorry you went through that & hope you are feeling better now.

I guess after all these years of being let down by doctors, I shouldn't be shocked, but nonetheless, when we are repeatedly failed by the people who are supposed to be looking after us, it is extremely worrying. And leads to an ever further lack of trust. I have had multiple blood tests where something will be marked by the lab as 'abnormal', but if the GP can't figure out what it means, they just tell you it's probably fine 🙄

[fuchsia-pink]

You clearly don't convert well, so if I were you, I'd contact Dionne at Thyroid UK for a list of T3-friendly endos who might give you a trial of T3. Lio has been an absolute life-saver for me, but it's tricky to get on the NHS because of cost. You don't have to see the endo who is closest to you - but it must obviously be reasonably convenient. Or have a new post asking for recommendations in your area. You then need your GP to refer you, but if they don't know much about thyroid [most don't] and think you may know more, or be "difficult" they will probably be keen to off-load you onto someone else

I'm not sure what the best email address is since the Thyroid UK website changed - but try [e-mail]

[Smorzando in reply to fuchsia-pink]

Thank you very much. I've emailed for this list this morning - best to be prepared! What I'm wondering, though, is if it's still too 'early days' to consider going down the T3 route (I know it's very hard to get); or if I need to continue, for a while, to 'tweak' things with Levo and nutrient levels...? I've also really got no idea what I should actually be saying to my GP at present, with these results.

Should I stay on 100mcg levo? Increase slightly? I should add I weigh 59kg so 100mcg is already just a bit over my 'full replacement dose' of 1.6mcg/kg.

[fuchsia-pink in reply to Smorzando]

You are already doing well with supplementing. I'm not sure I would increase levo when your free T4 is so high - but maybe 25 mcg on alternate days? As regards your GP, if s/he is reasonably sensible, I'd tell him/her that you are worried: you don't feel well; you clearly don't convert well; you are worried that an increase in levo will push you over-range but you need more T3 in your system; that you have read about people who are "poor converters" who benefit from different medication; that you have researched the position and would like a referral to see X please ...

Good luck x

[Smorzando in reply to fuchsia-pink]

That is very sensible advice, thank you very much! 🤗

[SlowDragon Administrator in reply to Smorzando]

I think you need to give it at least another 3 months

Getting vitamin levels optimal and trialling gluten/dairy free diets first

[Smorzando in reply to SlowDragon]

Yes, with all respect to Fuschia-pink I think that's probably best for now. A "Plan A" and a "Plan B".

It may well be that I am going to need some additional T3, but since that is very much not an 'easy' option, it would be prudent to do everything I can for the next three months to improve conversion, and then retest.

Thank you ☺️

[SlowDragon Administrator]

I would stay on the 100mcg levothyroxine at the moment and retest again in another 6-8 weeks

See if Ft3 is improving

Meanwhile as a non meat eater with low ferritin you need to work hard on improving iron levels

Strictly gluten free diet frequently does help....Frequently will slowly reduce TPO antibodies

Alternatively trying dairy free diet is an alternative (or both)

[Smorzando in reply to SlowDragon]

Thank you replying, SlowDragon. Yes, focussing on improving iron/ferritin as much as I can - have even been considering eating some meat 😮

Regarding going gluten free, my main hesitation is that fact that I have tried it before, very strictly for three months. I also excluded dairy and sugar at the same time. It was hard work, the only result I noticed was I lost too much weight (I'm already at the low end of a healthy BMI). But, that was then, this is now, so I think I should give it another go (gluten free that is, not the dairy for the moment).

Is there evidence that it can help with conversion? And regarding lowering antibodies - in what way does that help? I'm trying to get my head around this as much as possible

[SlowDragon Administrator in reply to Smorzando]

Obviously every person is different

But a high percentage of Hashimoto’s patients do find gluten free diet helps or is essential

Personally I find it absolutely essential.

Many many people report slow reduction of TPO antibodies. Now the antibodies aren’t the attackers of thyroid.....but they are the hoovers tidying up after attacks ....so drop in levels might suggest less attacks/inflammation happening