I’m really hoping that I can ask for some advice- I’ve come over from the pernicious anaemia forum. I will try to remember everything and keep it simple!
This time last year my daughter walked into a glass door whilst on holiday- didn’t lose consciousness and so on return to UK wasn’t investigated further (this might be completely irrelevant!). She very soon after started to get symptoms such as difficulty swallowing, weight loss, breathlessness, numb patches. GP thought iron deficiency so had blood tests and B12 came back at 92 Ferritin at 13 (this wasn’t picked up as ‘in range’)
After much to-ing and fro-ing she was given loading dose of b12 and then 2 weeks of alternate day injections. She now has monthly b12 injections and fortunately they have continued throughout lockdown. These symptoms have improved quite a lot, not perfect, but improved.
3/4 months ago her periods stopped. GP said to ‘keep an eye’ and then ran blood tests of her hormone levels- I also understood that thyroid disease may play a part in this (my mum has under active thyroid).
Bloods comeback showing PCOS and he has suggested contraceptive pill to try and stimulate a period. We have started on low GI diet this week and a supplement with folate and inositol too. She has put on a bit of weight and her face has increased hair.
Her tests came back as ( I ‘think’ these are the thyroid related ones as there are also lots of hormone tests - still trying to get my head around all of this!)
Se thyroid peroxidase Ab conc - 30.1
Serum free T4 - 13.4
Serum free T3 - 5.2
Serum TSH - 2.3
Does this mean she has autoimmune antibodies for thyroid- but her thyroid is currently functioning ok?
GP has said he will monitor by testing annually- I’m just not sure this sounds right?! Do we really wait a year?
I feel very helpless in all of this - she is due to go off to uni next year and I really want to send her off in the best place she can be ☹️ She has gone from being the healthiest and most robust child to someone with never ending symptoms...she is so upbeat and positive that this won’t impact her life, which is amazing- but I am so worried and don’t know what to do next for her?
I mentioned the head injury as I’ve read that whiplash can be a trigger for thyroid problems? Is this something you’ve heard too? Is this a reversible condition or will she always need to manage it? (A cranial osteopath said she had sustained a quite severe whiplash injury- then lockdown happened)
Huge apologies for the length of this post - any help would be so welcome 😊
We are based in the South West near Bristol/Bath and I’m wondering about an endocrinologist as next steps?
Best wishes, and thank you in advance
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Can you please add the reference ranges for the thyroid tests that you've posted. Ranges vary from lab to lab so we can only interpret results accurately when we have the ranges that come with the result.
It's not possible to say whether her antibodies are positive until we see ranges because we see different limits for them such as <30, <60 and sometimes even lower.
Se thyroid peroxidase Ab conc - 30.1 KU/L 0.00-8.00KU/L
OK, so her TPO antibodies are over range so that's a positive for autoimmune thyroiditis (Hashimoto's).
Currently her results are euthyroid. If her TSH goes over range with raised antibodies then an enlightened doctor should prescribe Levo.
Make sure any future tests are done the way we advise as this will give the highest possible TSH:
* Book the first appointment of the morning, or with private tests at home no later than 9am. This is because TSH is highest early morning and lowers throughout the day. If we are looking for a diagnosis of hypothyroidism, or looking for an increase in dose or to avoid a reduction then we need TSH to be as high as possible.
* Fast overnight - have your evening meal/supper as normal the night before but delay breakfast on the day of the test and drink water only until after the blood draw. Eating may lower TSH, caffeine containing drinks affect TSH.
[* If taking thyroid hormone replacement, last dose of Levo should be 24 hours before blood draw, if taking NDT or T3 then last dose should be 8-12 hours before blood draw. Adjust timing the day before if necessary. This avoids measuring hormone levels at their peak after ingestion of hormone replacement. Take your thyroid meds after the blood draw. Taking your dose too close to the blood draw will give false high results, leaving any longer gap will give false low results. ]
* If you take Biotin or a B Complex containing Biotin (B7), leave this off for 7 days before any blood test. This is because if Biotin is used in the testing procedure it can give false results (most labs use biotin).
These are patient to patient tips which we don't discuss with doctors or phlebotomists.
so she has positive antibodies, but thyroid is currently functioning normally?
Yes.
If so, is there anything preventative she can do to keep it that way?
Not really. Hashimoto's is where the immune system attacks the thyroid and gradually destroys it eventually leading to Hypothyroidism.
Keep testing and as soon as TSH she should hopefully get a diagnosis and prescription.
Fluctuations in symptoms and test results are common with Hashi's.
Most doctors dismiss antibodies as being of no importance and know little or nothing about Hashi's and how it affects the patient, test results and symptoms. You need to read, learn, understand and help yourself where Hashi's is concerned.
Some members have found that adopting a strict gluten free diet can help, although there is no guarantee.
Gluten contains gliadin (a protein) which is thought to trigger autoimmune attacks so eliminating gluten can help reduce these attacks.
You don't need to be gluten sensitive or have Coeliac disease for a gluten free diet to help.
Supplementing with selenium l-selenomethionine 200mcg daily is said to help reduce the antibodies, as can keeping TSH suppressed.
Hashi's and gut absorption problems tend to go hand in hand and can very often result in low nutrient levels or deficiencies. It's essential to test Vit D, B12, Folate and Ferritin and address any problems. You are welcome to post these results, including reference ranges (plus units of measurement for Vit D and B12), for comment and suggestions for supplementing where necessary.
(That's a copy/paste job so we know about the B12 situation )
Serum ferritin 39 ug/L Ref range 11-307. She is currently taking iron supplements prescribed by GP and her level is slowly climbing- it was 13 about 10 months ago and so told normal no action!
Folate 12.4 Ref range says <3 suggests deficiency. She currently takes folic acid as understand this helps b12 absorption
Not been tested for vitamin D
Then there are the hormone levels which came back showing PCOS. She is fed up as wants to just be a ‘normal’ 18 year old and doesn’t really accept that she will need to adjust her lifestyle potentially. Really feel for her having all this going on and just hope it settles down and doesn’t impact her too much ☹️
Hopefully her GP is monitoring her levels regularly whilst on iron supplements. Not sure what level he's aiming for but it's recommended to be half way through range but I've seen that 100-130 is a good level for a female. If her iron supplements are stopped then she should continue with something to maintain her new (hopefully good) level. Eating liver regularly (or liver pate/black pudding) should do this.
Her Folate level is OK and obviously if folic acid is prescribed then GP should be monitoring. It's a good idea to take a B Complex when taking any form of B12 as it keeps all the B vitamins in balance.
If GP wont do a Vit D test she can always do a blood spot fingerprick test privately with this NHS lab who offer it to the general public for £29
Sorry, but we do need ranges for all blood test results. They vary from lab to lab, so we need the ranges that go with her results.
That said, TSH ranges are always pretty much the same, and her result says that her thyroid is struggling a bit. But, she's not yet hypo.
Whilst whiplash can damage the thyroid, causing hypothyroisim, it has nothing to do with antibodies. If her antibodies are high, then her immune system has probably been secretly working away in the background, slowly destroying her thyroid, for quite some time. So, even without the whiplash, she would have gone hypo at some point. But it could be that the whiplast has just hastened the destruction. Either way, it would be irreversible, I'm afraid.
At this poinr, I don't think an endo would be helpful. There's not much he can do, and would probably refuse to see her, anyway, with those labs. And, whilst a whole year does seem a long time to wait, all you can do is just wait and see how things develop. If this is Hashi's, things could change quite suddenly, but unless there's a massive increase in her symptoms, I doubt the GP would agree to retest in the immediate future. Sorry I can't give you any more hopeful news.
Thank you grey goose - I’ve posted ranges above...still trying to get used to this! Could you give me an idea of the main symptoms to be aware of for Hashimoto’s? Would her periods stopping be one of them and can it be connected with Pcos and pernicious anemia? So hard to pick this apart!
Hashi's symptoms are simply hypo symptoms. There are no specific symptoms for Hashi's because it's the low T3 that causes symptoms. Her FT3 above is not low, it's euthyroid. But, with Hashi's, levels can jump around, so her FT3 might not always be at that level. It could be lower on occasions, causing symptoms. That is the main Hashi's symptom, I suppose: shifting levels of TSH, FT4 and FT3. But, she does definitely have Hashi's.
Low thyroid hormones can cause problems with periods and PCOS, because all hormones are connected and interdependant. But, the PA connection is that both PA and Hashi's are autoimmune, and autoimmune diseases tend to hunt in packs. One does not cause the other, but it just means that you are susceptible to autoimmune diseases and could develop others.
There is no age for thyroid disease. I believe mine started when I was about 8 years old.
But, I'm afraid it won't stop there. You have to face facts. Hashi's will slowly kill off her thyroid until she is entirely dependant on exogenous hormone to keep her alive. But, that does not mean she can't live a full and meaningful life. Plenty of people do. It's a very common disease.
For full Thyroid evaluation she needs TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common, especially if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies
Ask GP to test vitamin D and folate levels
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)
Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins
Eating iron rich foods like liver or liver pate once a week plus other red meat, pumpkin seeds and dark chocolate, plus daily orange juice or other vitamin C rich drink can help improve iron absorption
This is interesting because I have noticed that many patients with Hashimoto’s disease and hypothyroidism, start to feel worse when their ferritin drops below 80 and usually there is hair loss when it drops below 50.
Her iron level is now at 39 after supplements and she is continuing with this - bizarrely she has the thickest mane of hair!
She is being treated as P.A. as she isn’t veggie or vegan and eats well. She had intrinsic factor test and came back as normal- though understand this is a very unreliable test.
Do hard to know what to do next - our GP has been great and responsive to requests for tests etc, but hasn’t said what happens now apart from waiting and taking the pill to try and start periods back up
Thank you so much for all the information- will start reading today.
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