Unable to get a full Thyroid Panel from my GP - I took your advice and went to Medichecks for an Advanced Thyroid Test - as I now have the results - I would be grateful for any input that you can give me please. I am still feeling really unwell with many of the dibilitating symptoms that I have had for the past eighteen months - but now with a complete set of BT tests - I am hopeful that you might be able to give me further advice before I see my GP next week.
I am now on 100mcg Thyroxine and have been since the beginning of November. I have been taking B12 Drops and B Complex including Folate since October - the BT was taken at 8.45am having fasted and no Thyroxine for 24 hours -
Any help or suggestions would be much appreciated as I am desperate to feel well again.
The Medichecks results are as follows -
TSH
10 Jan 2023
0.06 mU/L
0.27 - 4.2 R
FREE T3
10 Jan 2023
5.87 pmol/L
3.1 - 6.8 R
FREE THYROXINE
10 Jan 2023
19.1
pmol/L
12 - 22 R
Read More
THYROGLOBULIN ANTIBODIES
10 Jan 2023
10 IU/mL
< 115 R
THYROID PEROXIDASE ANTIBODIES
10 Jan 2023
<9 IU/mL
< 34 R
Read More
FOLATE - SERUM
10 Jan 2023
18.22 ug/L
> 3.89 R - 19.45
VITAMIN B12 - ACTIVE
10 Jan 2023
147 pmol/L
37.5 - 150 R
VITAMIN D
10 Jan 2023
85 nmol/L
50 - 200 R
Read More
FERRITIN
10 Jan 2023
715 ug/L
13 - 150 R
CRP HS
10 Jan 2023
0.34 mg/L
0 - 5 R
Written by
Lemondrizz1
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Did you leave off the B Complex for 3-7 days before the test? If so comments as follows:
TSH: 0.06 mU/L (0.27 - 4.2)
FREE T3: 5.87 pmol/L (3.1 - 6.8) = 74.86% through range
FREE THYROXINE: 19.1pmol/L (12 - 22) = 71% through range
THYROGLOBULIN ANTIBODIES: 10 IU/mL (< 115)
THYROID PEROXIDASE ANTIBODIES: <9 IU/mL (< 34)
Thyroid results look very good and no suggestion of autoimmune thyroid disease (Hashimoto's) with those low antibody results.
FOLATE - SERUM: 18.22 ug/L (> 3.89 R - 19.45)
VITAMIN B12 - ACTIVE: 147 pmol/L (37.5 - 150)
Folate and B12 are at the top of their ranges. B12 suggests you no longer need to take a separate B12 supplement and just continue with the B Complex, this should maintain your levels.
VITAMIN D: 85 nmol/L
I note from previous post you said
My Vit D was last taken 14/9/22 and was 91
a slight drop which may be due to us not being able to make Vit D naturally during the winter months.
The Vit D Council, Vit D Society and Grassroots Health all recommend a level of 100-150nmol/L with a recent blog post on Grassroots Health recommending at least 125nmol/L.
If you want to supplement to improve your level then you'd probably be looking at taking 2,500iu D3 daily along with D3's important cofactors - magnesium and Vit K2-MK7. Check out my post about supplementing with Vit D here
and check out the link to the Vit D Council. You are welcome to ask me for more information.
FERRITIN: 715 ug/L (13 - 150)
CRP HS: 0.34 mg/L (0 - 5)
As your CRP (an inflammation marker) is very low then your ferritin is not falsely raised due to inflammation. This ferritin level is very high and is higher than when tested by your GP. This was discussed in a previous post here:
Was anything done about you seeing a haemotologist? I would push your GP for further investigation because from your results here your thyroid and vitamin levels do not show any cause for concern, it's only your ferritin level that does.
I feel as if I am going round in ever decreasing circles and apart from 3/4 weeks after the increase of 75mcg and again 3/4 weeks after the increase to 100mcg when I experienced the symptoms lifting - but this did not last and I now continue to feel so ill with all these dibilitating symptoms.
Yes according to your recommendations I did stop the B Complex a week prior to my BT.
It is good that my Thyroid now seems under control - but I would just like to feel well.
Would you say from the Medicheck results that I should continue on the 100 mcg of Thyroxine - or maybe as I think my GP will suggest - because of the low TSH - for me to decrease the dose ?
I had asked via my Gastroenterologist - to have a referral to a Haematologist - but it seems that this was not possible as they had nothing further to add - with regard to my Raised Ferritin.
Would you say from the Medicheck results that I should continue on the 100 mcg of Thyroxine - or maybe as I think my GP will suggest - because of the low TSH - for me to decrease the dose ?
In my opinion definitely stay on 100mcg Levo, it's giving you good hormone levels at 75% and 71% through range. We always say here that the aim of a treated hypo patient on Levo only, generally, is for TSH to be 1 or below with FT4 and FT3 in the upper part of their reference ranges, if that is where you feel well. Yours are approx 3/4 of the way through range which is often a very good place to be.
If GP suggests reducing dose based on TSH then refuse, point out that your FT4 and FT3 are in a good place, well within range and not close to the top of the range. It's FT3 being over range that tells us if we're overmedicated, it's just a pity that most doctors don't know this.
I had asked via my Gastroenterologist - to have a referral to a Haematologist - but it seems that this was not possible as they had nothing further to add - with regard to my Raised Ferritin.
I find this quite appalling that they are quite happy to leave you as you are with no further investigation.
This is very encouraging - but I guess that the GP will say that I am not well on the 100mcg - - my argument will be that I did start to feel well but it did not last ??
So hope that he will agree to keep me on the 100 mcg
If the dose was too high - what symptoms would you expect to get to indicate this.
Because of the high raised ferritin - I did have the Hemochromatosis Gene test a year ago but it came back negative - although I see that a lot of the symptoms that I am suffering are also listed for Hemochromatosis - would this test be conclusive - or are there any other tests to check this further please.
If the dose was too high - what symptoms would you expect to get to indicate this.
Symptoms of overmedication are like symptoms of hypERthyroidism. You are nowhere near overmedicated, your FT3 would be over range.
Because of the high raised ferritin - I did have the Hemochromatosis Gene test a year ago but it came back negative - although I see that a lot of the symptoms that I am suffering are also listed for Hemochromatosis - would this test be conclusive - or are there any other tests to check this further please.
Sorry Lemondrizz, I know nothing about that test.
The Haemocromatosis Society has a forum here on HealthUnlocked which you might find useful:
Thank you so much Seaside Susie - I will get in touch with them.
Having had time to think about the results and your comments - I am sorry to take up more of your time but I have another couple of questions please.
As my Thyroid Levels now appear to be looking good - I have been trying to work out why I am still having so many symptoms and feeling so ill -
You have said that I should not reduce my Thyroxine - but apart from my low TSH - would there be any room to increase it at all - my weight is 47 kg -
From the Medichecks results it does look as if my Vitamin D is the lowest of all vitimins right now and I am wondering if taking further Vit D supplements might help the Lethergy and fatique - I realise that everyone is different, and at 85 right now I wonder what level you would like to see to achieve this - and your thoughts on this please.
I was given some Adcal - D3 Chewable Tablets when I was on the Budesinide Steroids without realising that I was on the Cholecalciferol 1000 IU (25 ug). So I am wondering whether to add this in to bring my levels up. If so each tablet contains 1500 mg (equivilent to 600 calcium) and 400 I.U. Cholecalciferol (equivilent to 10 micrograms of Vit D) - At that time I was prescribed to take 2 of these tablets per day - so not sure if I should take one or two of these tablets in addition to my Cholecalciferol 1000 IU (25 ug). per day.
Apart from this - I understand that weight loss can be caused by Raised Ferritin levels and it could of course still be this that is causing my symptoms and making me feel so ill.
It is so good to have your support - when everything is such a struggle with the GP.
Treating hypothyroidism is, I have concluded, very difficult. So much is involved besides the thyroid - adrenals, nutrients, etc. Then we are all different and what is right for one isn't right for another, so it's always a case here on the forum that members tend to talk about what's worked for them, and doctors have so little understanding of the whole thing that they think taking one little white pill a day is a magic cure and they don't understand why we are still unwell but aren't willing to look for the reason.
You have said that I should not reduce my Thyroxine - but apart from my low TSH - would there be any room to increase it at all - my weight is 47 kg -
I don't go for the dose by weight thing. Yes it has been adopted as a starting point for some new hypo patients, but it's just a guide to starting on Levo it's not meant to be a formula for the ultimate dose for the patient. If it was your dose would be
47 x 1.6mcg = 75mcg
and it looks like that wasn't the ideal dose for you.
I believe we need what we need because we're all different, and we have to find that individual dose.
Your current dose of 100mcg is giving you a very reasonable 75% through range FT4 and 71% through range FT3. Generally someone with these levels would find them good, they are nicely balanced, 3/4 of the way through the range so not too high, and if all nutrients were at optimal levels and adrenals good then theoretically thyroid-wise things should be pretty good.
I personally would be wary of going any higher. Before I discovered this forum and learnt so much my GP kept increasing my dose of Levo due to my symptoms but it did nothing for me except keep me unwell. At one point she had me on 200mcg Levo which gave an FT4 of 34 (11.8-24.6) which was 173.4% of range. My conversion was poor because a previous result of FT4 which was 109% of range only produced an FT3 that was 58% through range. But this obviously was way beyond my GP's understanding (also that of a dreadful endo she sent me to but that's another story).
I have since learned that to keep on pushing FT4 higher and higher is not really the answer but we have to dig deep to find the problem before we can rectify it.
But this is all my own experience and it may or may not be relevant in your case.
From the Medichecks results it does look as if my Vitamin D is the lowest of all vitimins right now and I am wondering if taking further Vit D supplements might help the Lethergy and fatique - I realise that everyone is different, and at 85 right now I wonder what level you would like to see to achieve this - and your thoughts on this please.
Some people would be fine with a level of 85. Personally I need mine where the Vit D Council, etc, recommend so I keep mine as close to 150 as I can (testing twice a year and tweaking dose of D3 if necessary). However, I was originally severely Vit D deficient with a level of 15nmol/L and I don't know if this has made a difference in my case.
I mentioned above the link to my dedicated post about supplementing with Vit D and said that to achieve the recommeded level you'd be looking to supplement with 2,500iu D3 at the moment. It might be worth you trying this to see if it helps.
Because of the high raised ferritin - I did have the Hemochromatosis Gene test a year ago and it came back negative - although I see that a lot of the symptoms that I am suffering are also listed for Hemochromatosis - would this test be conclusive - or is there another test to check this further please.
I did have Iron Studies done 20/10/22 with the following results. Would this still stand or should I ask for a repeat -
Serum Iron Level(X76tH) marked above range - 27.7 umol/L [11.0 - 25.0]
Serum TIBC (XE2mF) 47 umol/L [45.0 - 72.0]
Serum unsaturated iron binding capacity (XabAY) 19 umol/L
Transferrin Saturation - Above range - 59% [15.0 - 45.0]
From the Medichecks results - would you suggest that I stay on 100mcg Thyroxine or should I make a decrease - as I suspect my GP will be requesting ?
I am just trying to be as informed as possible when I see him next week.
I had asked for a referral to a Haematologist - via my Gastroenterologist - but she said that it was not necessary as they had nothing further to offer.
1) just because your bloods say you 'should' be feeling well, doesn't mean you will, and not immediately. We fall into the same trap the GP's do if we believe that 'should' automatically follow the moment you hit the 'right' levels. your body has been sick for a long time and needs to recover. Part of the picture with hypo is that your adrenals are affected, they are the last to begin to function normally once thyroid levels are good. if you still have symptoms after investigating your iron issue, it may be worth checking your cortisol.
2) do you take your dose all at once in the morning? if so maybe try splitting and taking half of it at night. it can make a difference to how you feel, and follow natural production more closely. should also help you sleep if that is an issue.
3) 70% through range may not be your personal ideal; some people need it higher (some lower). Some people do better on replacements other than straight T4.
Many thanks turquoisea 7 and sorry for the delay in getting back to you -
I found your comments very interesting -
With regard to the splitting of the Levo dose - I have tried this without success so have returned to taking the full dose in the morning - I tried having a half dose in the afternoon but found this quite difficult to fit into my daily activities - so then tried taking it at bedtime - but this seemed to affect my sleep and caused me to dream a great deal.
I have been suffering with further symptoms and my Dr has arranged for me to have a B12 injections as some of these are particular B12 symptoms - and although my B12 levels are not low - he thinks it would be worth trying this to see if it might help.
As I have been feeling really unwell for such a long time (18 months now) I am pinning my hopes on this being a solution to regaining my health.
I'll be interested to hear how you get on with the B12 injections. I know almost nothing about that particular problem other than (and I could be wrong here) that standard NHS tests only test total serum B12 and not active B12; so (as with so many NHS measures), if your B12 levels 'look normal' they may actually not be in terms of what your tissue can use. I'm sure someone will correct me if I'm wrong, this is based on helpful comments from a member of the B12 forum, who has also suggested I get my active B12 levels tested.
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