Surely this can't be right, can it?: Hello... - Thyroid UK

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Surely this can't be right, can it?

Kitten-whiskers profile image
16 Replies

Hello everyone,

I have been to the doctors to request a blood test for the antibodies as it hasn't been checked for 3 or 4 years, he asked why I wanted the blood test, as last time my antibodies were 681 so that indicates Hashimoto's Thyroiditis and that it didn't matter whether the reading was 1 or 2000 it makes no difference at all, it is meaningless, he then proceeded to talk about my goitre - he touched my throat briefly and said my goitre had probably gone now, can that happen?

He then claimed that I can never get well and what I have been reading is misleading.

Is any of what he is saying true?

Thank you x

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Kitten-whiskers
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16 Replies
Marz profile image
Marz

He is just another Doc running scared as he knows so very little about auto-immune issues or how to treat them. At least he looked at your disappearing goitre which I suppose is something in his favour. Are you receiving treatment ? Sorry should have looked at your earlier posts :-) Yes goitres can subside I believe.

It would be good to know how the anti-body status is after 4 years - it is not unreasonable to ask in my opinion !

Of course you can become well - so he is wrong again....but obviously not under his care :-(

What supplements are you taking ? Do you have your recent blood test results with ranges ? Keep on reading and learning - it's how must of us recover our health !!

Kitten-whiskers profile image
Kitten-whiskers in reply to Marz

Hello Marz,

Thank you for your reply : >

I don't really have any test results that are up to date - I should get the ones I requested in about a weeks time - that will be the TSH, FT3 and FT4 & the TPA.

I do have medication - it is the Liquid T4, I have a dreadful time taking any form of thyroid meds, that is why I now have this, I only take a tiny bit a week otherwise I get extremely ill if I take more, This is why I normally avoid the surgery because I am scared they will take it away from me. I suffer terribly because I can not take nowhere near enough medication to feel any good, lot of the time I have Hypo and Hyper symptoms and now I have betablockers as well, it's no fun at all, it causes me great stress when the doctors say to me you are never going to get better as some of the symptoms can be unbearable.

I will keep reading, I can not afford to believe that I have to spend my life in this way.

I do have quite a lot of supplements like Zinc, Vit B, D, Betaine, Calcium & Magnesium, Flaxseed oil, and Selenium.

It is really good to know people get better, I have been battling for so long now

Best wishes

Debs

Marz profile image
Marz in reply to Kitten-whiskers

Oh dear - that is really hard for you. Will look out for your next results. As you have Hashimotos - do you also have gut issues ? - as opposed to stomach issues.

How do you get along with taking your supplements ? Sorry to hear about the beta blockers - oh dear it would be so good if you could find someone that would encourage you rather than being negative....

Kitten-whiskers profile image
Kitten-whiskers in reply to Marz

Hello Marz,

I do have gut Issues, I have been reading up on Hashimoto's

I get along fine with the supplements, it's the medication that is my biggest problem, I wonder if it would be worth trying a different version, although already trying a reasonable selection, it doesn't look likely it will help.

I feel really bad, the pain is so bad, I think when I visit the vets tonight I will ask him to put me down.

I have tried acupuncture, which hasn't made a difference yet, I have given up gluten. Next on the agenda is giving up dairy and repairing the gut.

I pray things improve

Marz profile image
Marz in reply to Kitten-whiskers

I hope so too :-) Have you considered trying just T3 ? I have read about others that couldn't tolerate Levo were OK on T3....

My opinion of Vets is very high - they seem to know about thyroids and treat the animals well. My dog is on 400 mcg T4 !

Kitten-whiskers profile image
Kitten-whiskers in reply to Marz

Good morning Marz,

Wow 400mcg T4 , I quite agree, my vet is lovely, he always goes the extra mile - my cat will be 20 in a few weeks so theirs the evidence,

I am sure if he was a doctor I would be better than I am now

Marz profile image
Marz in reply to Kitten-whiskers

...apparently doggies need more T4 - think they do it by weight too ! He worked it out from a book ! Which is also a human method for some but not all :-)

Hope you soon feel better and that your puss cat has many more years :-)

Kitten-whiskers profile image
Kitten-whiskers in reply to Marz

Thank you Marz and for your advice to, much appreciated.

Take care : >

Barb1949 profile image
Barb1949 in reply to Kitten-whiskers

Kittenwhiskers, if your doc was a et you probably would be a lot better - vets train for 2 years longer than doctors - go figure!

Barb

Kitten-whiskers profile image
Kitten-whiskers in reply to Barb1949

Hello Barb, Two years longer, that explains it. I find also that the vet does care about the animals. I have never known a doctor to give a monkeys - it's minimum effort for them. Best wishes Debs

Barb1949 profile image
Barb1949 in reply to Kitten-whiskers

;-)

shaws profile image
shawsAdministrator

I think your doctor needs to consult a doctor particularly as he says we cannot get well. He is probably right if he goes by the guidelines laid down by the BTA but not if we are given medication which suits us and at an optimum level. Not being diagnosed by the TSH alone or medication adjusted to keep our TSH within a 'range' considering it is from the pituatary gland in the first place and not the thyroid gland. It also changes throughout the day too.

I would ask to be referred to an Endocrinologist and if he agrees to refer you re your goitre post a question asking for a Private Message for a recommendation in or around your area.

If you did have antibodies if you've been taking levothyroxine that's what he means that the treatment is the same. If you've had a recent blood test (first thing and not taking your medication before it) get a print-out with the ranges and post for comments.

shaws profile image
shawsAdministrator

I see you've had difficulty with levothyroxine. Maybe your body just doesn't tolerate a synthetic thyroid hormone. The next best thing (as they won't prescribe NDT) is to ask for a trial of T3. I had great difficulty on levothyroxine with terrible palpitations and other symptoms I didn't have before I took levo. When I took T3 (even though it is synthetic) I felt so much better and I am on T3 only now and feel fine, with energy and normal health.

Kitten-whiskers profile image
Kitten-whiskers

Good morning Shaws,

I am so glad to hear you are well now, you really did suffer, so their must be hope for me, it was the medication that has made you well, that is where I differ from lots of people on this site, because I have such an issue with the medications, at present I just about get by on a tiny amount once every 6 days, so know where near enough to make me feel any good, just enough to make the fibromyalgia just about bearable , my symptoms are a mixture of hypo and hyper.

I was thinking a lot about what you said and I wonder if my chest pains, etc are to do with the levo, I did get them with the other meds but not to the same extent.

Do you think it is possible for the immune system to attack the Thyroid medication? Their must be something I am doing to cause these terrible flare ups, because sometime I can have days where i really don't feel to bad and then for know obvious reason it just all goes to pot and I feel like I am dying, this can last for weeks at a time.

The doctor I saw yesterday was actually the best doctor by far at that surgery, I asked him for the TPO test - he did not know what that was but done the Anti Thyroid peroxidase test. I saw an endocrinologist a few weeks back and she said she couldn't do anything for me, it is no good for me to keep hearing that, so I think it best to stay away, although she wants me to go back, only reason I can think is she wants to stop the medication.

I have tried proberly six different forms of thyroid medication, do you think it would be worth trying another?

Thank you for your help Shaws - it is much appreciated

in reply to Kitten-whiskers

I couldn't tolerate just T4 so have just added Nutri Thryoid under a doctors guidance. After 4 years of chest pain & palpatations, it has all gone away. Still early days but hopefully this will continue.

Regarding the antibodies I dont think there is any treatment prescribed by a doctor so they are just not bothered what level of antibodies we have. I keep mine in check with a healthy life style & gluten free diet. It has made all the difference.

Kitten-whiskers profile image
Kitten-whiskers in reply to

Thank you Gill007,

I'm sure your right, the doctor was very reluctant to check the antibodies. I have trouble tolerating any thyroid meds, mind you I have not tried all of them, but a good selection.

I am trying to get off meds altogether but it is easier said than done.

I went gluten free back in December, it has improved my energy levels but nothing else but still early days.

I hope you continue to improve

Best wishes

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