Has anyone received treatment with a TSH just i... - Thyroid UK

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Has anyone received treatment with a TSH just inside range, but positive TPOab?

ali7967 profile image
15 Replies

Hi,

I followed the advice on here and had my blood tests early (7.30am!) after fasting. 

My results are as follows:

                                                     3 months ago       1 Year ago

TSH 4.01  (range 0.27-4.2)          TSH 3.17                TSH 2.81

FT4 13.3   (range 10-21)              FT4 13.32               FT4  -

My only abnormal results were:      

MCV 101.7  (77-98)                       MCV 99.9             MCV 97.7

MCH 34.8   (27.5-32.5)                  MCH 33.8

I have read that hypothyroidism can cause this?

Ferritin, B12 and Vitamin D had all improved with supplements and were in range (just) I am continuing to take supplements to raise these higher.

Ferritin  42.1 (41-100)  was only 15.2   3 months ago

B12  582 (180-2000)    was 319  3 months ago

Vitamin D  73.2 (adequate)

I also have TPOab which have increased from 204 to 329 (>100) and a family history of thyroid problems (sister and Grandma) also autoimmune illnesses. I have also had my gallbladder removed and have discovered that the slowed metabolism (hypothyroidism) also causes gallstones and problems with the gallbladder and liver. 

I have many symptoms of hypothyroidism, but the GP said TSH is in range.

 I haven't made an appointment since receiving these latest results and need advice.

Thanks.

      

                    

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ali7967
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15 Replies
shaws profile image
shawsAdministrator

I'm sorry you are not feeling well. If you have high antibodies the doctor should have prescribed levothyroxine as antibodies indicate an Autoimmune Thyroid Disease called Hashimotos. 

Unfortunately your GP is toeing the line that states we shouldn't be prescribed until the TSH is 10 whereas in other countries we will be prescribed if it reaches 3+.

email louise.warvill@thyroiduk.org and ask for a copy of Dr Toft's Pulse Online article wherein he states if antibodies present, to 'nip things in the bud' a prescription should be issued.

thyroiduk.org.uk/tuk/testin...

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Anything connected to the thyroid gland seems to me that we have to gain knowledge ourselves otherwise.......

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It seems to me that the worst things doctors can do is only go by the TSH result without querying about clinical symptoms. For hypo there are around 300.

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Treepie profile image
Treepie

Your TSH is rising and without treatment you will become sicker as your thyroid is being attacked by antibodies.Your B12 could do to be much higher in the range.

Bambalam profile image
Bambalam

Hi,

I am one of the rare breed who's GP treated the symptoms not my blood level. 

NICE guidelines do allow for a 'trial' dosage of thyroxine if the GP wants to give it and your symptons fit.

My TSH was only 2.5 when I was first given it- at its height it had only been 4.8. I had facial changes, hair loss and loads of other symptons.

5 years later I'm now on 125mcg and my bloods are great. I feel great thyroid wise, lost all the weight, face is normal again and have hair 😊

Good luck 😊

hunny59 profile image
hunny59

Your high MCV and MCH seem to indicate macrocytic anaemia, caused either by B12 or folate deficiency.  I'm surprised your GP hasn't done anything about either, but don't suppose I should be surprised.  Have you had your folate levels tested?  High folate levels can mask a true B12 deficiency and your levels 3 months ago would certainly indicate problems as neurological symptoms can manifest at levels below 500.  That said, once you start to supplement, serum blood tests are as good as useless for B12 - the fact that you've been supplementing and still only show a level of 582 would seem to indicate a problem to me. 

That said, I'm not a medical professional, just a fellow sufferer who has had to find her own way with the help of the folks on here.

ali7967 profile image
ali7967 in reply to hunny59

I have had one B12 injection privately,  and have been supplementing with sublingual B12.  Unfortunately, the injection made me feel ill-hot and very anxious and I am scared to have any more. A high dose of B12 makes me feel weird and gives me panic attacks.  Is this normal?  

hunny59 profile image
hunny59 in reply to ali7967

I honestly can't say if it's normal.  I noticed when I first started was that I'd get very tired after a high dose and had to sleep.  I always felt fine when I awoke - it was almost like my body realised I'd given it something to heal so sleeping was the best way to utilise it.  As I've raised my levels, that has stopped happening.  I've read some posts where people almost seem to be worse initially when raising their levels, whether by injection or sublinguals.  Others may have more advice than me.

Certainly I've noticed that most of the anxiety that I used to have has now disappeared almost completely - I'd just assumed that worrying about nearly everything was just a part of getting older. I'm quite relieved that it's not been the case for me!

in reply to ali7967

Have you tried b12 subcutaneous. It's less of a shock to your system than intramuscular. It leaches through to blood stream from the fat in over 3 days. I take them like this and I'm fine. Also I find them very calming.

ali7967 profile image
ali7967 in reply to

How do you get a subcutaneous injection?  The intramuscular injection was given by a well respected B12 expert.  When I got home I felt very tired and hot.  I woke in the early hours shaking and crying, I was in a real mess.  It frightened me so much, I didn't go back.  My anxiety levels were through the roof.  I have been quartering my 300mcg  tablets and still feeling a bit strange. My husband has taken them without any effects.

missymystique profile image
missymystique

I have similar results with you. I was feeling bad and they were not treating me because TSH was in range. I told them I want to get pregnant ( although I wasn't planning at that point) and they put me on thyroxine considering your tsh has to be <2 during pregnancy.

ali7967 profile image
ali7967 in reply to missymystique

Unfortunately at 48, I don't think my doctor would take me seriously if I said I was thinking about getting pregnant.  I have an appointment with a private endo in 2 weeks time and am hoping he will be able to help. Fingers crossed.

Wwwdot profile image
Wwwdot in reply to ali7967

What is an “endo” I am new to all this. Thank you

🤗🤗🤗

TiggerMe profile image
TiggerMe in reply to Wwwdot

You've picked up a 7 year old post which might be a bit out of date... the answer is Endocrinologist though 🤗

Wwwdot profile image
Wwwdot in reply to TiggerMe

Thank you Eeyore

I thought it worth a punt as I am completely bewildered at the moment. And you came through and I have rescue donkeys (French Poitou crosses - so horse size) thank you a million times over

🤗🤗🤗

TiggerMe profile image
TiggerMe in reply to Wwwdot

Well I had to google them! They are remarkable, interesting coats.

Ask away but perhaps a new post of your own or some of the more recent chats will be more rewarding 🤗

edit... just realize you have I read about your husbands dire B12... mine too has just got a result of 198!!

000ggg profile image
000ggg

Yes I did start treatment in January with tsh around 2.25 and t4 was 1.2 I think. My  tpo antibodies were 49 (0-9) when tested last June. I had to have an argument to treat it, but then I didn't start until January when I found out I have osteoporosis. I started on 25mcg. Then on the next test tsh was 2.9 and t4 went up. My last blood work showed tsh was 1.32, t4 wasn't tested this time. I was on 50mcg then and had started on 25 mcg for the first 6 weeks.  

I stopped it for 3 days last week because my blood sugar was very high and then I had to start again because I had a terrible headache. Oddly enough when I took 25mcg my headache got better. So I'm back on a lower dose now, except last night I got confused and I think I may have taken 50mcg, hopefully not. lol. 

I'm not really sure if I want to continue on it due to the high bg, but I will see how it goes on 25mcg for a week and if my bg is ok I will stick with that for a while. I just hope my body isn't hooked on this stuff because I don't want to go through a withdrawal etc. if I have to get off it completely.  

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