Grateful for any advice: Hi Guys, I have Hashis... - Thyroid UK

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Grateful for any advice

hw7342 profile image
17 Replies

Hi Guys,

I have Hashis. Results below show levels before Levothyroxine and 6 weeks after. Currently on 50mcg but doctor refuses to raise dose as i am very 'normal'. My symptoms have not changed at all on this dose, in fact i probably feel slightly worse. I am supplementing Iron because i was anaemic in March and i am having the usual suspects all tested tomorrow ferritin, D, b12 etc. Supplementing B12 1000 Methylcobalmin, zinc, selenium 200, b vits. I personally think i need to go up another dose on the Levothyroxine to raise my FT4. How can it not have changed but my TSH has lowered? Adrenals all fine did saliva test via genova in March. If anyone has any information on sourcing Levothyroxine online then please PM me... As always very grateful for your valuable input.

before levo in April 2016:

TSH 5.11 (0.35-5mU/L)

FT4 13.2 (9-22 pmol/L)

FT3 5.0 (2.6 - 5.7 pmol/L)

After 50mcg in June 2016

TSH: 1.76 (0.35-5mU/L)

FT4 13.9 (9-22pmol/L)

FT3 4.4 (pool/L)

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hw7342
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17 Replies
hw7342 profile image
hw7342

sorry FT3 range is as the first lot (2.6-5.7pmol/L). This strikes me as a bit of a low starting range?

Zubakuki profile image
Zubakuki

The range is a little on the low side, would like to see a bit higher FT3.

Would also like to see the FT4 higher in the range too.

I would not recommend self medicating until you have exhausted your gp. I made an appointment every time I went for 4 weeks later and kept bugging them about my symptoms until they did something about it. I am now on Liothyronine and although not perfect, I am much better than I was on levo x

hw7342 profile image
hw7342 in reply toZubakuki

Thank you for replying Zubakuki. I would be back there every two weeks if i was brave enough but unfortunately when i was younger i had very severe mental health problems and even though i recovered through years of therapy and managed to work and start a family i still find myself discriminated against by a lot of g.p's. As soon as i mention any symptoms such as fatigue, foggy head etc etc i am immediately lumped back into the mental health queue. I have to be very careful what i say as when i was pregnant with my son i had to go through a psychiatrist panel meeting with social services present. This was after 5 years of good health, a university degree and having worked very successfully for 2 of them. My husband attended with me and could not actually believe how i was treated, he thought i was exaggerating beforehand. I have to have someone with me at every appointment now. It is good to know that T3 helped somewhat for you. Thank you.

Marz profile image
Marz in reply tohw7342

So sorry to read of your journey and the lack of understanding within the medical profession. Could it be that you have always suffered with low thyroid which we read time and time again can be the cause of mental illness.

Are you on any medication at the moment which may skew your thyroid results as they are just a little unusual - Low FT4 and yet a reasonable FT3. Or at least better than many we see on the forum !

As you are supplementing B12 - there is little value in having it re-tested as the results will be skewed. What is circulating in the blood is guide - it is what gets into the cells that is important - and there is not test for that. So go by the earlier result that had you supplementing in the first place :-) You cannot overdose as excess is excreted. A good B Complex is also required to keep the B's in balance and to provide Folate that works with the B12 in the body. Do you have a result for B12 ?

Hope you soon feel better ....

lidoplace profile image
lidoplace in reply toMarz

Marz

Have you read this about b12 test

"You could test her active levels with the active (holotranscobalamin) B12 test (HoloTC) The trouble with the B12 blood serum test is it only measures the amount of B12 in the blood stream and not the active amount being utilised.

Vitamin B-12 can only be absorbed in the small intestine and due to intestinal ailments common in Hashi sufferers, many with high levels may not be able to absorb it in their gut. Vit B12 is released for absorption by the activity of hydrochloric acid and protease, an enzyme in the stomach and supplementing Betaine HCI with Pepsin and digestive enzymes may help with absorption if there are any gut issues.

GP do not understand Hashimotos or the possible accompanying genetic impairments and subsequent deficiencies that stop us w

measuring only the

active Vit B12. This is available on the National Health at St Thomas’ Hospital, London with a referral from your GP.

Alternatively, measuring MMA (Methylmalonic Acid) and Homocysteine on the National Health can be useful as high levels may determine low B12. Intrinsic Factor and Parietal Cell Antibodies will highlight an inability to absorb B12 via the gut and also give Folate status.

High serum B12 that can not be used properly by the cells will be exported back to the blood where it binds to haptocorrin. This is then imported by the liver and recycled via bile to the gut (salvage and recycle pathway for B12). This B12 will be unusable to the bodies cells making you "deficit in B12 with a high serum level reading" and create harder work for the liver.."

Marz profile image
Marz in reply tolidoplace

Yes I have :-) I am without a Terminal Ileum and have been for over 40 years so am well aware of the dangers of LOW B12 .....

I am also on the PAS forum where you read these interesting facts every day.

lidoplace profile image
lidoplace in reply toMarz

So the HoloTC would not give me better understanding of whether I am absorbing the b12 I take ? Now confused as you said there was only one test. Apologies I should have looked up your profile before posting that info - still on learning curve!

Marz profile image
Marz in reply tolidoplace

We are all still learning ! There is bound and unbound B12 in the blood and the Active test reveals the amount available to be transported to the cells. Not sure which it is !!

If you post on the PAS forum they are so helpful ...

hw7342 profile image
hw7342 in reply toMarz

Hi März thank you for your kind words. It seems very possible to me that my previous battles with mental health could have been related to my thyroid or at least some disharmony within my body... it all started in my early teens with joint pain and fatigue and then went further downhill from there. I am not on any medication now bar a microscopic dose of anti depressant (a quarter of the smallest dose available). Do you think this could skew blood results? Should i take this away from the levo? I did think the T4/T3 ratio was a little odd too. My previous B12 results were around the 400 and 500 mark but that was with supplementation (not methylcobalmin) - i have never had it tested before supplementing unfortunately....

Marz profile image
Marz in reply tohw7342

I really do not know if your AD is skewing your results - although I once helped a friend on AD's and thyroid results were strange. I would take the Jarrow Methylcobalamin B12 - perhaps the 5000mcg for a while to see how you feel. Also take a good B Complex to keep all the B's in balance.

Joint pain so young sounds as if you could have a gut issue - maybe causing inflammation - possibly gluten ? They talk so often now about the gut microbes and our health - including mental health. Can point you towards information if you are interested.

I think you should also have your thyroid anti-bodies tested - as having Hashimotos can sometimes produce unusual results :-) I had in range FT4 and FT3 - also TSH - but the anti-bodies - Anti-TPO and Anti-Tg - were very high. Fortunately I live in Crete so was started on treatment.

I am not a medic - click onto my name and read my Profile - so you can see I have had to learn the hard way :-)

hw7342 profile image
hw7342 in reply toMarz

My TPO Ab are at 70 at present which is above range so Hashimotos. Agreed about the gut i was plagued with yeast infections too from 13 onwards and none of the drugs would get rid of it. My mum has Rheumatoid Arthritis. I am gluten and dairy free at present. I will have a nose at your profile Marz. All the best x

Marz profile image
Marz in reply tohw7342

Sounds as if you are doing so many good things :-) Keep up the good work ....

hw7342 profile image
hw7342

Hi there. I know, this is what i thought too. Someone on here convinced me to give it a good go before attempting to try anything else. Has anything helped at all for you reallyfedup? Thank you for replying.

Treepie profile image
Treepie

Odd results with FT4 low in range but FT3 just over halfway.It could be highet and I suspect you could do with an increase . Try to persuade your GP for a trial increase as your symptoms are still there.You will probably be told there is some other cause - unknown! Your TSH can be below 1 and FT3/FT4 still be in range .

My TSH is 0.18. The docs will try to reduce the dose when they next look.

hw7342 profile image
hw7342 in reply toTreepie

Thanks Treepie x

hw7342 profile image
hw7342

Hi again. I know, everything seems at least half way except for my iron which was abysmal and i was trying to raise it before starting Levo but someone on here said i should just start the levo anyway. I will keep chugging along with the supplements. I have a test today for it all. Also waiting for DIO2 Gene test result which might shed some light on the efficacy of the Levo for me. Thank you.

debstayalive profile image
debstayalive

Hi have you tested for other intolerances? Eggs yeat etc? Also have you looked into gut infections H Pylori etc are really common in us hashis 😊

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