Swollen Lymph nodes & Hashi swing!

[Mrs-Jones]

Hiya has anybody else has swollen lymph nodes in their groin and neck during a Hashimotos attack? It’s really painful, my tummy is in agony and I can barely swallow. Ultrasound confirmed they are swollen and waiting on CAT scan results. I’ve also swung from hypo to hyper and endo has decided to take me off all thyroid meds - bit scary! But I suppose Im feel dreadful already anyway. She says it’s not normal, but I’m sure I’ve read on here that other people have swung back and forth, so anybody know if this is a regular thing?

[greygoose]

Oh dear! What is not normal is that an endo knows so little about thyroid! It is what happens with Hashi's. That's how Hashi's works. And, when all the excess hormone has been used up or excreted, you are going to be hypo again. So, she's going to look a little bit silly, then, isn't she!

But, it's nothing to be scared of. If you start to feel hypo again, you just go back and tell her so. But, in between being 'hyper' (it's not true hyper, in that your thyroid is over-active) and going hypo again, you might feel pretty good for a while.

What were your labs, did you get a copy? Post them here, with the ranges, and let's have a look.

[Mrs-Jones in reply to greygoose]

I’m just going to type the ones of note as I have seven pages of them!

Ferretin 778 ng/ml. (10-120)

TSH. <0.0005. (0.35-5.50)

B12. 206 pg/ml. (221-911)

Free T4. 1.46 ng/dl. (0.78-1.8)

Free T3 9.54 pg/ml. (2.3-4.2)

Vitamin D 72 ng/ml. (20-50)

TTPA. 36.7 sg. (26-36)

I have a few other results that aren’t quite right and had a TPO one previously that was off the charts but last 3 tests haven’t seemed to include that

I have been put on B12 tablets and propanol and told to stop all thyroid meds

I have a swollen submandibular in my neck, hard to swallow and breathe, migraines, ear and throat pain. My enlarged groin lymph nodes are extremely painful and my whole body hurts, severe back pain, night sweats, insomnia, losing weight, can’t eat much, just the usual really but I would very much like to feel better

[greygoose in reply to Mrs-Jones]

Hmmm… Those are weird.

Well, your ferritin is much too high. Were you supplementing? Wht is your doctor doing about that?

Your B12 is under-range. But your doctor should not be giving you B 12 tablets without testing you for Pernicious Anemia. If you start taking the B12 tablets, you won't be able to test for it. So, hold off them until you get tested. Besides, you shouldn't just be taking B12, you should also be taking a b complex, because all the Bs work together, and need to be kept balance. But, is such a low B12, I would have thought you need injections, not just tablets. What sort of tablets has he given you? What does it say on the label?

No folate tested?

That's a very short range for vit D. Are you sure about that?

So, thyroid… Your TSH is very low, but that by itself doesn't make you hyper - and, in actual fact, as you are hypo, you can't go hyper. You can be over-medicated, or you can have a Hashi's 'hyper' swing, but your thyroid cannot become over-active.

So, your FT4 is good. If you were having a Hashi's 'hyper' swing, it would be a lot higher than that.

It's your FT3 that is strange - and suspect. What were you taking at that point? Levo? T3? NDT? And how much? Were you taking anything with biotin in it?

What is TTPA?

Lot of questions, there.

Never mind about them not testing TPO antibodies. Once you've had one high result, it means you have Hashi's, and that doesn't go away. Antibodies fluctuate, but it doesn't mean anything. So, really no point in retesting.

[Mrs-Jones in reply to greygoose]

Hiya I just replied but not sure if it did it as an actually reply! Sorry my head is all over the place 🤪

[SlowDragon Administrator in reply to Mrs-Jones]

So you have Hashimoto's

Hemochromatosis (iron overload) is perhaps more common with Hashimoto's

ncbi.nlm.nih.gov/pubmed/182...

redriverhealthandwellness.c...

Have you ever had ferritin tested before?

If this high ferritin result is due to hemochromatosis it would be very unlikely to be a one off result ...ferritin would have been high for long time

Clearly you need full iron panel to see if iron is high, or just ferritin

I think the range is wrong on vitamin D

Vitamin D range for ng/ml is usually 30-150

B12 is extremely deficient...especially if been supplementing before this test.... and likely need B12 injections

You need folate tested

Obviously your FT3 is currently high. As you say, likely due to Hashimoto's flare

You will need bloods retested regularly..perhaps in two weeks to see if situation is fluctuating rapidly

[Mrs-Jones in reply to SlowDragon]

Hi slowdragon, yes I had ferretin tested before and it is going up. My other iron levels are all normal

I will ask to be tested for folate and hemochromatosis and the anemia one when I go plus ask about the vitamin D reference

Thanks so much for your help 😊

[Mrs-Jones]

Thanks so much for looking at this. I feel very poorly indeed and appreciate your help

I asked the endo about ferretin but she said the other doctor will look at it in internal medicine. So I will ask her in a couple of weeks when I see her. She has seen that result though and not commented on it.

I wasn’t taking any supplements at all just Thyroid-S (3.5 grains) which I have been feeling great on until I had a flare. I’ve changed my diet to AIP now and trying to be careful, could this have caused a change?

I’ve just looked over my other test results and found that this is my test for reticulocyte count (absolute) 0.0351 10^6/uL (0.05-0.15) could this suggest pernicious anemia? Is this something usual for hashi?

My tablets are actually B1 B6 & B12 (Hodroxil)

I live in Spain so could that make my Vit D high? I don’t eat red meat so I don’t really understand it.

TTPA looks like it is PTT test in English is something to do with blood clotting.

[greygoose in reply to Mrs-Jones]

I asked the endo about ferretin but she said the other doctor will look at it in internal medicine. So I will ask her in a couple of weeks when I see her. She has seen that result though and not commented on it.

She probably doesn't know anything about nutrients, so is passing the buck!

I wasn’t taking any supplements at all just Thyroid-S (3.5 grains) which I have been feeling great on until I had a flare. I’ve changed my diet to AIP now and trying to be careful, could this have caused a change?

But, you didn't have a flare. I don't know what you had. If you'd had a Hashi's 'flare', your FT4 would have been very high, too. But, with that high FT3, it's not surprising you feel bad, and I'm pretty certain it had nothing to do with the AIP diet.

reticulocyte count

I've never seen that tested for Hashi's before. It's to check the amount of red blood cells produced by your bone marrow. If it's low, it could be due to Pernicious Anemia, yes. But, it's one of those tests that tells you if there's a problem, but doesn't tell you what it is. For PA you need more precise testing.

Your doctor prescribed B1, B6 and B12? All in one tablet? Or three different tablets? How much of each?

If you live in Spain, and you were tested for vit D in Spain, the range would take into account the possibility of high levels due to the sun. But, it's the range I'm questioning. I've never seen a Vit D3 range that stopped at 50 - they usually go up to about 150. That's why I asked you to check. If the range goes up to 150, your vit d is low-ish. Which would be unusual for a hypo. I think you must have the range wrong. And, yes, you most definitely can have low vit D living in Spain.

[Mrs-Jones in reply to greygoose]

It’s really strange because my T3 & T4 have been fine up until my last test. I did have CRP that was really high before but that’s gone back to normal now since I changed my diet. I had ended up in hospital in a uk visit looking like I was ready to give birth, they duschsnged me and said they didn’t know what was wrong.

It’s says vitamin D 25 Hidroxi with that range of 20-50 so maybe they got it wrong?

I’m taking one tablet and it’s B1 250mg, B6 260mg and B12 500 microgrammes. Now I’m looking it seems to contain potato?! Oh god I never thought to check as I assumed she would give me anything I wasn’t supposed to have !!

[greygoose in reply to Mrs-Jones]

Are you allergic to potatoes?

The problem with what she's prescribed is that it isn't nearly enough. 500 mcg B12 won't do anything for you. You need more like 5000 mcg! But, you really mustn't take it until you've been tested for Pernicious Anemia, or you'll skew the results.

I'm really wondering if that high FT3 isn't due to laboratory error, or interference of some kind with the test. If I were you, I would want it repeated before doing anything else.

[Mrs-Jones in reply to greygoose]

No not allergic just trying to be care with nightshades

I must admit I’m not feeling great about the advice but she wants my blood tested in another 6 weeks after taking no thyroid meds and a gamma radiation one. I see the doctor who gave me the Vitamins and propanol on 26th so I will ask if she can do another test on me then. It’s so frustrating because they all say they want to see me within in a week but there are no appointments free.

If I stop taking the vitamins now will it be in time to have a test on 26th?

[greygoose in reply to Mrs-Jones]

Well, potato or no potato - and it would only be a tiny amount, anyway - I don't think that's the right thing to take. You'd be better off with a B complex, with all the B vits in it. They should all be take together, not the odd one here and there.

How long have you been taking this b tablet?

[Mrs-Jones in reply to greygoose]

I’ve only been on them a couple of weeks so not very long. I think I will ask about injections if it’s still low

[greygoose in reply to Mrs-Jones]

OK, wells top taking them now, until she's done the tests for PA. But, wait a couple of weeks before asking, give the vits time to get out of your system. It would be better if you could actually get the diagnosis of PA, even if she's willing to give the injections without. I would suggest you have a look on the PA forum, and maybe ask their advice about which tests to ask for. They know more about it than I do.

healthunlocked.com/pasoc

[Mrs-Jones in reply to greygoose]

That’s a good idea ! I will do that now thank you 😊

[Mrs-Jones]

Thanks so much for looking at this. I feel very poorly indeed and appreciate your help

I asked the endo about ferretin but she said the other doctor will look at it in internal medicine. So I will ask her in a couple of weeks when I see her. She has seen that result though and not commented on it.

I wasn’t taking any supplements at all just Thyroid-S (3.5 grains) which I have been feeling great on until I had a flare. I’ve changed my diet to AIP now and trying to be careful, could this have caused a change?

I’ve just looked over my other test results and found that this is my test for reticulocyte count (absolute) 0.0351 10^6/uL (0.05-0.15) could this suggest pernicious anemia? Is this something usual for hashi?

My tablets are actually B1 B6 & B12 (Hodroxil)

I live in Spain so could that make my Vit D high? I don’t eat red meat so I don’t really understand it.

TTPA looks like it is PTT test in English is something to do with blood clotting.

[Mrs-Jones]

Hi all a quick update, I went to see the internal meds doctor and asked about PA and could I be tested? She said no and then I said why do you think my ferritin is so high is that dangerous? She literally had no reply. She admitted me to hospital because of the pain in my groin but it was for yet another CAT scan looking for diverticulitis! I refused the scan as I’ve already had it and took myself to a digestive expert. He says your thyroid is very ill and so all of your organs in your body are very ill, you need help! I said well I’m trying but they took me off of my meds and it feels like my throat has been cut. He looked at my tummy and sending me for a colonoscopy for suspected ulcerative colitis or Crohn’s disease. I have a gamma radiation test on Wednesday and I go back to the internal meds doctor on Thursday and will ask for an updated blood test to check my levels and start myself back on NDT, the endo wanted me to wait another 4 weeks but I’m not doing that, it’s making me feel so ill. I will then search for a new endo !!

[Mrs-Jones]

A year later I'm. Posting my outcome in case anybody else has the same problem. It took a long time and many tests to get there but I know exactly what is wrong and it is now under control.

When going gluten free I continued to take the same level of NDT. My body healed a little and it sent me into a hyper swing. Then I went AIP which made me loose more weight.

It turned out that as well as hashimotos., I have pernicious anaemia, hip bursitis and riddled with osteoarthritis. I take b12 shots every two weeks and collagen supplements and im doing a lot better. I'm greatful for all of the advice I received as it made me push to ask for the right tests 😁 thank you x