Good morning. I haven't posted in here in a while because to be honest I gave just given up.
In Jan 2011 I was finally diagnosed with Hashimoto's. In April 2011 I was very unwell and had jaundice. A diagnosis within 24 hours was Autoimmune Hepatitis overlap Primary biliary cholengitis. SO, in a matter of 4 months, diagnosed with 3 Autoimmune conditions. I have treatment for the Autoimmune liver conditions but still no treatment for diagnosed Hashimoto's.
I am very aware that there is a direct link between hashimotos and Autoimmune Hepatitis (AIH).
I have suffered with thyroid nodules since age 21. My mum and my gran had hashimoto's. Both had thyroid removed. So for 36 years, no Treatment for my hashimoto's.
Symptoms, headaches, nausea, very powdery, dry, skin regardless of how many days a week I moisturize. I have a thyroid nodule that keeps causing problems, especially on a bad day, hoarse voice, fatigue, aches and pains, plus many others. However, every time I contact my gp, he puts everything down to my liver condition. My bloods and everything related to my liver are excellent, all within good ranges.
It has to be the hashimoto's...
Does anyone know the best way to report about an untreated, but diagnosed condition ? and what would be the best over the counter supplement to support my thyroid.
I take vit C, D3, Magnesium K2, and calcium. I also have osteoporosis because of medication to treat my liver conditions but I expect a dodgy thyroid can cause this too.
This thyroid nodule feels different each day it gets irritated when under attack from antibodies. I can feel it constantly. My diagnosis of hashimoto's was found by an ent consultant, who did a fine needle aspiration of my thyroid nodule. Result came back as hashimoto's and the nodule was full of antibodies.
Gp tells me that my TSH is in range at 12.9. I am never checked for any other thyroid levels like T3 reverse T3 reverse T4.
Does anyone know the best lab for private tests too please.
Thank you for any information you can give. I am so tired of getting nowhere.
Take care x
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Alley27
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Do you get print-outs of your thyroid labs? Because there's no way that a TSH of 12.9 could be in-range. Or did you mean your FT4 is 12.99? In which case it would probably be very low. Although we'd have to know the range to be sure.
There's no such thing as reverse T4, and reverse T3 is not worth testing for because it doesn't give you any useful information. But, you do need the FT3 tested. So, have you ever considered getting private bloods? That really would be the best starting point, and take if from there.
Doctors hate hypothyroidism. They hate diagnosing it and they hate treating it, and they would probably cut off their right arm rather than do it. So, that's why they fob you off as much as possible with silly stories like it's all to do with your liver condition and a TSH of 12.9 is in-range! Up to us to prove them wrong, I'm afraid.
I’m so sorry you are feeling so unwell. Many if your symptoms are definitely thyroid related. Do you have copies of any thyroid blood tests you can share (with ranges in brackets)? If not, ask your GP for a copy.
A TSH of 12.9 is way too high. It’s important to know your T4 and T3 levels, so members can best advise.
I test my Thyroid bloods & key vitamins (ferritin, folate, B12 and vit D) with Medichecks (which are often discounted on Thursdays, so maybe worth a look).
Hashimoto's isn't treated, it's the resulting hypothyroidism that is and for that you need a full thyroid panel - TSH, FT4 and FT3. With raised antibodies and an over range TSH (but not necessarily reached the magic 10 that is required for Primary Hypothyroidism) then you should get a diagnosis of autoimmune thyroid disease and a prescription for Levo.
Gp tells me that my TSH is in range at 12.9.
Are you absolutely sure that is the TSH result? Ranges generally are around 0.2-4.2 or 0.35-5.5 or maybe something similar in between.
If your TSH is 12.9 (and this can be confirmed by you asking the receptionist at your surgery for a print out of your test results, the result and range will be on there and no mistakes will be possible) then your doctor is a complete idiot and has been very negligent.
First thing to do is get that print out and see exactly what the TSH result is.
I am never checked for any other thyroid levels like T3 reverse T3 reverse T4.
You don't need reverse T3 and there is no reverse T4 test. What is important is Free T4 and Free T3.
A high TSH and a low FT4 shows hypothyroidism.
Does anyone know the best lab for private tests too please.
We have a few recommended private labs shown here (some have discount codes):
How much D3 do you take? Do you regularly test Vit D (twice a year is recommended when supplementing) to know your level and ensure you take enough or don't take too much?
It would be best to do a full thyroid/vitamin bundle and these two are populalr:
Both tests include the full thyroid and vitamin panel. They are basically the same test with just a few small differences:
Blue Horizon includes Total T4 (can be useful but not essential). Medichecks doesn't include this test.
B12 - Blue Horizon does Total B12 which measures bound and unbound (active) B12 but doesn't give a separate result for each. Medichecks does Active B12.
Total B12 shows the total B12 in the blood. Active B12 shows what's available to be taken up by the cells. You can have a reasonable level of Total B12 but a poor level of Active B12. (Personally, I would go for the Active B12 test.)
Blue Horizon include magnesium but this is an unreliable test so don't let this sway your decision, it also tests cortisol but that's a random cortisol test and to make any sense of it you'd need to do it fasting before 9am I believe.
Both can be done by fingerprick or venous blood draw at extra cost.
If you want to do the fingerprick test I have tips to help so just ask if you would like me to post them.
Always advised here, when having thyroid tests:
* Blood draw no later than 9am. This is because TSH is highest early morning and lowers throughout the day. If looking for a diagnosis of hypothyroidism, an increase in dose of Levo or to avoid a reduction then we need the highest possible TSH
* Nothing to eat or drink except water before the blood draw. This is because eating can lower TSH and coffee can 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 phlebotomists or doctors.
what would be the best over the counter supplement to support my thyroid
Don't! Thyroid support supplements frequently tend to be multivitamins with iodine, or contain other things with iodine. Iodine solution used to be used to treat hypERthyroidism and can make hypOthyroidism worse, and it's definitely not recommended when Hashi's is present.
12.5 TSH was ignored completely by my gp. I was tested again, on the 25th May, but I have not received the results yet. I apologise for not replying to your message, I have been unwell with my AIH.
I spoke to him again about treatment and his reply was, you have hashimoto's which is autoimmune and you are taking immune suppressant medication, which should help.
So yeah I am stuck.
As for vitamin D, I have been prescribed vitamin d from gp because my level was low, last time my B12 was checked it was abnormal something like 1200...yes you heard me , but it is possible with autoimmune liver disease to have abnormal vitamin B12.
My thyroid nodule is really bothering me at the moment so I asked to go back to see an ENT...not an endo to get it drained again.
I have had a celiac panel done which came back normal and, I am mostly vegetarian, with some fish. I don't eat anything much with gluten. I tend to stick to fruit, nuts and vegetables. My grandson who is 6 asked grandma for rice krispies when he stays over, so I had to get them for him lol.
I will ask my gp for the tests you recommend and if he agrees to do them for me, I will post the results. If he refuses, I will get them done privately.
Thank you 😊I am on it as we speak. I will probably go private for the tests as my gp just has no clue. He puts everything down to my AIH/ PBC overlap. 2 lovely autoimmune liver diseases....thanks again for your reply .
on the 25th May, but I have not received the results
You are legally entitled to printed copies of your blood test results and ranges.
The best way to get access to current and historic blood test results is to register for online access to your medical record and blood test results
UK GP practices are supposed to offer everyone online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.
In reality many GP surgeries do not have blood test results online yet
Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up.
Important to see exactly what has been tested and equally important what hasn’t been tested yet
For full Thyroid evaluation you need 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 with autoimmune thyroid disease (Hashimoto’s or Ord’s thyroiditis)
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 .
Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
If your GP's practice has it set up, you can log in online to view test results. Well worth doing if it's available. Then there's no waiting for the receptionist to get round to doing a printout. Also no chance that they can say 'normal' or 'in range' without giving you the details.
Hi Alley27. It seems that those of us with thyroid issues have all had to come to the realisation that we’ve got to be our own health advocates. There is some great advice above. I’d suggest you read all you can especially from doctors who themselves have these problems - it’s amazing how it affects their views!! For me personally what also made big differences is adding selenium and zinc to my supplements, taking collagen, and following a strict AIP diet for several months. Good luck and I hope you feel better soon.
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