Would greatly appreciate comments following my latest NHS tests results.
After starting B12 treatment (since February - 3 injections/week) and supplementing with Iron Fulmarate for 3 months (stopped for over a month now) and VitD3 for a few years (stopped after my calcium levels became elevated about a month ago).
I still supplement with Folic acid. Have been concerned to load my system with too many vitamins so have not been supplementing with B vitamin complex as am worried I may then take too much B6 as this is added to many foodstuff, and I eat a good diet (am aware I may not absorb nutrients well enough as have reactive gastritis and take the dreadful PPIs...). However please advise whether I now should consider taking B complex and which would be best.
Would also like to know what is the best VitD to take, as well as haeme or ferritin instead of iron fulmarate and would like to know how haem or ferritin work for those of you who are taking it.
Have not been diagnosed with PA nor with B12 deficiency - though the injections have made a big difference to start with, not so well now. Have rheumatoid arthritis and inject a biologic drug every week - Enbrel (Etanercept). I am hypothyroid (post thyroidectomy in 1980) and take 100 mcg and 75 mcg Levothyroxine on alternate days.
Have been feeling so ill for the past 3 years, and after getting a little better after starting the B12 treatment I am now feeling absolutely dreadful! Tinnitus coming back, feeling of spaceyness in my head and as though I might faint (used to faint often last year), feeling of lacking oxygen in my brain and body, unable to function to do even an everyday task in the house (am 71). Huge fatigue and simply feeling out of it altogether. Have been losing my hair by the handful, especially when I wash it, for quite a long time now, and many more symptoms. Naturally I feel scared not knowing what is really happening to me, and feeling so out of sorts.
Cannot count on GP to help so that is another source of anxiety and it leaves me feeling extremely low and vulnerable. Yet I used to be a "doer", always very busy and quite cheerful and a positive person. Thought I would give some background before posting my test results in the hope I will receive much needed good advice and ideas of how to tackle my GP when I see her tomorrow morning. Am running out of ideas as I feel defeated by the lack of care.
THYROID FUNCTION TESTS
TSH 1.54miUl/L (0.3 - 5.5) (this was 0.35 in May and 0.85 in March,)
FT4 20.8pmol/L (12-22) this was 22,4 in May and 23.1 in March)
T-Peroxidase 17 kU/L (< 34) (this was 18 in March)
FT3 3.3 pml/L (3.1-6.8) (this was 4 im May and 3.9 in March)
BLOOD COUNT
WBCs 8.55 10*9/L (4 - 10)
RBCs 4.88 12*12/L (3.80-4.80) above range but coming down as was much higher (was 4.91 in May and was 5.30 in March)
Haemoglobin 136 g/L (120-150)
Haematocrit 0.411 g/L (0.360-0.460)
Mean cell volume: 84.2 fL (83-101) (has been going up as was below range before)
Mean cell Hb level 27.9 pg (27-32)
Mean cell Hb concentration 331 g/L (315-345) (this was 338 in June)
Platelet count 310 10*9/L (150-400)
BONE METABOLISM
Calcium 2.46 mmol/L (2.20-2.60)
Albumin adjusted calcium 2.65 mmol/L (2.20-2.60)
HAEMATINICS
Ferritin 98 ug/L (30-400)
Serum Folate >20 ug/L (3.89-26.8)
LIVER FUNCTION TESTS
Serum bilirubin: 6 umol/L <21
Alkaline phosphate 70 IU/L (40-129)
Alkaline aminotransferase 9 IU/L (<40)
Total protein 69 g/L (60-80)
Globulin 39 g/L (25-41)
ELECTROLYTES
Sodium 141 mmol/L (133-146)
Potassium 4.6 mmol/L 3.5-5.3)
Urea 3.8 mmol/L (2.5-7.8)
Creatine 65 umol/L (45-84)
Estimated GFR >60 mL/min/1.73m*2
Vitamin D (25 OHD) 107 nmol/L (50-144)
Thanks you so much for any help and advice.
Best wishes.
Written by
JGBH
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You didn't give the ranges for Free T3 and I think it may be low. We need both FT4 and FT3 towards the upper part of the range (and your FT3 at 3+ seems low). However, this is a personal opinion and believe people who have had a thyroidectomy should be given a dose of T4/T3 combination at the minimum. You may not be converting T4 into sufficient T3.
Other members will respond re your the other results.
Your TSH is too high. We feel best when it is one or lower and some need it suppressed to feel well. Doctors are apt to warn us that we'll have heart attack or osteo if TSH is low but this is not true.
Many of us on the forum have 'low' stomach acid due to being hypo as everything slows down. We are able to increase stomach acid as it is necessary in order to dissolve food in our stomach. We either supplement with Betaine with Pepsin tablets or take a good Apple Cider Vinegar (with mother) in water or juice when taking meals. PPIs reduce what stomach acid we do have.
I am not medically qualified but had undiagnosed hypothyroidism. I am now well thanks to Thyroiduk.org.uk before the forum was started.
Do you always have your blood tests at the earliest possible, fasting (you can drink water) and allow a gap of 24 hours between last dose of levo and the test.
Thanks for reply. Sorry about missing out the ranges for T3, I have now edited my post. I am aware T3 is much too low and that I am a bad converter... but the doctors don't seem to want to know... My TSH was quite low about a month ago - can't find the results unfortunately at the moment, but it was something like 0.2 (0.3-5.5) and it was "flashed" as being under range..... GP said I was hyper....
Indeed I had my test done before 8 am, fasting, no thyroxine for 24 hours.
Is there a protocol that states people who have had a thyroidectomy (had a partial one but was told by surgeon only a very small part of gland remained and that it would dry up once I was taking Levothyroxine, so that puts me in the category of having no thyroid, I presume? I had papillary carcinoadenoma in 1980 but there were no scans then and the surgeon did not think (Yes, I like it they they say they "don't think"... how scientific is that?) I had any form of cancer, just an enormous 4 nodules goitre, and it was after lab results that papillary cancer was diagnosed.
No wonder you feel so bad your FT3 is at the bottom of the range. Howe can we function if the only Active thyroid hormone (T3) is at the bottom, instead of the top of the range.
Read the following. Some of us need a very low or suppressed TSH but most doctors have been told (by whom I have no idea) that we will have a heart attack or osteo which isn't true. Most likely we'd get these if we aren't on an optimum dose.
You can try to source some T3 of your own although it has been difficult recently but hopefully things will improve.
We don't post any information on the forum of where to source prescribed medication but you can put up a new post and ask for private message to be sent to you.
We have to take things into our own hands at times. All of us on this forum know how unwell we can be if undiagnosed/undermedicated.
I have my thyroid gland but was very unwell on levothyroxine alone. I improved when I took NDT (T4, T3, T2,T1 and calciton) the very original thyroid hormone prescribed since 1892 until levothyroxine and blood tests were introduced in the 50's. We still got NDT prescribed if we asked for it but now they have removed it altogether along with T3 recently. Although T3 can still be prescribed if we have a 'clinical need' but they still have removed it from those who were doing well.
I source my own T3 now. GP did prescribe but when Amdipharm ran out altogether and the doctors were undecided about prescribing other non-licenced T3 on a 'named-patient' basis I thought it was best if I got my own. We need the confidence that we will always have a replacement as we cannot be left 'high and dry'.
Thank you for your reply. It looks like sourcing the much needed medicine is the only way to obtain T3 nowadays. It is what I will do once I have seen private endo and he has prescribed T3, as I think he will do.... An added stress which we should not have to cope with.
Based on my own experience and similar symptoms to you, I would agree with shaws that your TSH is too high and FT3 too low, even a small amout of T3 might help you, you can only ask.
Have you had your selenium,zink and magnesium checked ?
Thanks for replying. Yes, I am a poor converter. However, T3 will not be prescribed by an NHS endo.... so private endo and private prescription.... and hope I will be able to source T3 at a reasonable price...
Are you taking T3? If so how soon did you feel better?
I have been taking T3 for approximately one year. I convinced my endo to give me a trial, I went armed with literature to help fight my case. She was very reluctant at first as I have hypertensive heart disease with left ventricular diastolic dysfunction therefore most doctors would not give me T3.
I started on 20mcg of Thybon (Henning) per day which I took in two doses of 5mcg, then 10mcg morning and evening and began to feel better within the first week. One of the concerns doctors have is an increased heart rate but I had that anyway and no one was doing anything about it. If anything my rate dropped slightly but remained >90 bpm at rest, for this reason T3 was reduced to 10 mcg per day after much deliberation. My endo wanted to stop it altogether but I convinced her to let me try 10mcg and I promised to stop it if my heart rate continued to rise. My heart rate is now 70 bpm at rest which is uncanny as my TSH is surpressed and most doctors diagnose me as hyperthyroid and want to discontinue my L-T3 and L-T4 (Levothyroxine 50mcg75 mcg alternate days) but I won't let them. I do not have any signs or symptoms of hyperthyroidism and T3 improved my symptoms and gave me my life back.
I also corrected all deficiencies, iron , selenium, vitamin D and increased my injections of B12 (I have PA) plus took Biotin N (vit B complex) for hair and nails. Thankfully, I am stable now but that can change very quickly therefore I am always vigilant. Unfortunately, my hair remains thin and brittle but is no longer falling out in handfuls.
Hopefully, you will be able to try T3 under doctor supervision but if not, then please inform yourself before embarking on this medication alone.
Thanks for your most informative note. It is wonderful you are feeling so much better now, considering the heart problems. I think you have been rather lucky the endo did not refuse the prescription of T3 regarding this problem. Well done to you for not giving in though. and wishing you continued better health. x
Having seen an endo privately last November, recommended by Thyroid UK, he said in my case he would not recommend I take T3 because it would make me worse. Yet he has prescribed T3 to people he thought needed it. I had cortisol tests done + other tests and they did not show any abnormalities. Must repeat the test several times. Naturally am reluctant to start self-treating with T3 at the moment. I may have to see someone else and see what they suggest. However, feeling so unwell and just recovering from major surgery (total knee replacement) I don't think I should experiment with T3 just now.
I will consider doing the DIO2 gene test once I am back home
Indeed I have had other tests done since that time but have been feeling too unwell to post. Being in much pain recovering from 1st knee replacement operation (on top of other health issues) and in yet much more pain 24/7 waiting for my 2nd knee total replacement operation saps whatever energy I still have left, not a great deal, plus feeling very down. Was told I won't be able to have my 2nd op for 5 to 5 and half months!!! How is one supposed to cope with such pain for that length of time? can't keep on taking strong opiate painkillers for that length of time, would be addicted in no time. If I were a dog they would not keep me waiting in such pain for that length of time! Will try to give my latest blood test results over the weekend or just after. Thank you for your support SD.
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