Struggling with Hashimoto's Symptoms for 2 years. Need advice

[crw2ddd]

Since my daughter was born in February 2017, I discovered I had Hashimoto's after getting postpartum thyroiditis that has never calmed down and still plagues me no matter what I do.

Upon diagnosis in June 2017, my TPO was 9,000 and my TSH was 93, and went over 100 a month later. By October 2017, my TSH went down to 3.5, and at this point I was put on 50 mcg of Synthroid for about 8 months. My primary symptoms are gritty, irritated and light sensitive eyes, depressed mood, fatigue doing small tasks, muscle and body aches, occasional shortness of breath, hair loss, and bruising on my legs. My TSH never changed on this dose and I added 2.5 mcg of Cytomel in June 2018. My TSH hovers around 3-4 (.358-3.740 is the scale) The Cytomel was upped to 5 mcg in August 2017. By November 2018, I went hyper on this dose -- my TSH was .0015 and my T4 was elevated. I had a mild tremor and a racing heart. My endocrinologist told me to take 50 mcg Synthroid 5 days a week and I discontinued the Cytomel. I felt pretty well, comparatively, for about 2 weeks. Then all the symptoms returned, most annoyingly, the gritty, irritated eyes that only seems to respond to the t3 medication. I started back on 2.5 mcg Cytomel with my 50 mcg Synthroid 5 days a week. In January 2019, my TSH was 14 (.358-3.740 mclU/mL range) and the T4 was 1.14 (.82-1.7 ng/dL)

I saw a new endocrinologist who upped my Synthroid to 75 mcg, and took me off the Cytomel again she also put me on Glutathione, Omega 3s, Selenium, Vit D, B12, and Iron. I did a thyroid uptake scan and, which reveals Hashitoxicosis and the ultrasound showed a very vascular and mangled gland. My thyroid uptake was high as seen with Graves, but my thyroid levels are all low, as seen with Hashimoto's. She tells me this is the most difficult kind of Hashimoto's to treat and I may need to have my gland out. This sounds very drastic to me. My lab results after being on 75 Synthroid alone were as follows:

TSH 3.790 (0.45 -4.5 iIU/ML)

Free T3 3.0 pg/ML (2.0-4.4 range)

Rt3 32.3 ng/dL (9.2-24.1 range)

Free t4 1.62 ng/dL (.82-1.77)

Thyroglobulin antibody 1.0 IU/mL (0.0-0.9 range)

TPO Ab 258 (0-34 range)

She added a compounded t3 medication (4mcg) in a slow release capsule, which i started 5 days ago. My eyes feel better, but I still crash in the afternoon where i have to take a nap, and get body aches and I still have very low energy all day long. I don't know what to do anymore. I am 33 years old and mother to a5 year old and a 2 year old. I've been living in this nightmare for a year and a half and I just want my energy back and my symptoms to cease. My mom and her sister both have Hashimoto's and they take 125 mcg Armour daily. I wonder if I have the polymorphism that does not convert T4 to T3 well, since they take so much Armour and do well on it.

[shaws]

Welcome to our forum and I am sorry you're not feeling well. I think as your Mother and Sister are doing well on Armour I'd take it on a trial basis. The fact that Armour contains all of the hormones a healthy gland would do, i.e. T4, T3, T2, T1 and calcitonin rather than levothyroxine (T4 alone which is an inactive hormone and has to convert to T3).

125mcg of Armour isn't too high because it is measured in grains and 1 gr is around 100mcg of levothyroxine (in its effect).

The aim is a TSH of 1 or lower with Free T4 and free T3 in the upper part of the ranges.

The majority on this forum is due to members not feeling well with whatever dose of thyroid hormone replacement they take, most are given levothyroxine initially. In the UK, they have stopped prescribing NDT (Armour etc) and also T3 (liothyronine the Active thyroid hormone) and will only prescribe levothyroxine i.e. T4.

I wouldn't waste more time and give yourself a trial of Armour and the aim is a TSH of 1 and TSH (thyroid stimulating hormone) is from the pituitary gland, not the thyroid gland and rises if we're becoming hypothyroid. Hyperthyroid is the opposite and many doctors seem to think that if our TSH goes low we've become hypERthyroid but that isn't the case.

There's no harm in a trial of Armour.

All blood tests for thyroid hormones have to be at the very earliest, fasting (you can drink water) and allow a gap of 24 hours between last dose and the test and take it afterwards.

Considering that NDT (Armour etc) has been in use since 1892 and before that hypo patients died a terrible death and it is still in use today. Levothyroxine is T4 alone and has to convert to T3 and some of us cannot recover on levothyroxine.

One of our deceased doctors only took one blood test for the initital diagnosis. Would never prescribe Levothyroxine only NDT or T3 (liothyronine) alone for his thyroid hormone resistant patients. They started on a dose and every 2 weeks added a 1/4 tablet always taking account of symptoms and the relief of them

Our vitamins/minerals also have to be optimal, i.e. Vit B12, Vit D, iron, ferritin and folate. It is necessary for everything to be 'optimal'. Going gluten-free can help reduce thyroid antibodies and it is the antibodies that attack the thyroid gland until we're hypo.

[shaws]

The aim is a TSH of 1 or lower with FT4 and FT3 in the upper part of the ranges.

[greygoose]

I'm afraid I don't understand a lot of what you're saying - and I suspect your doctors don't understand about what they're doing. If your TSH was over 100, why didn't they start you on Synthroid at that point? Why wait until your TSH came down to 3.5? Or were you taking something else that you haven't mentioned?

By November 2018, I went hyper on this dose

I very much doubt you did. You are hypo, so you can't 'go hyper', the thyroid doesn't work like that. You could be over-medicated, but on 50 mcg T4 and 5 mcg T3, I very much doubt you were over-medicated. On 50 mcg T4 and 2.5 mcg T3 you were very under-medicated, because your TSH was 3 or 4, you said. It should be 1 or under.

No, I think you had a Hashi's 'hyper' swing, where the dying cells, after an immune system attack, dump their stores of hormone into the blood, causing the FT4/3 to rise sharply, and the TSH to drop. So, the response should have been to just stop your thyroid hormone for a few days, to give the levels time to come down by themselves, and then start back on your previous dose - with possibly an increase.

I started back on 2.5 mcg Cytomel with my 50 mcg Synthroid 5 days a week.

Your endo really doesn't know what s/he is doing, because you cannot dose T3 that way. Not if you want to get well. With T3, you need a steady, constant daily dose. And, 2.5 mcg T3 is such a tiny dose that it's hardly likely to do anything, anyway. Not surprised your TSH went up to 14!

My thyroid uptake was high as seen with Graves, but my thyroid levels are all low, as seen with Hashimoto's. She tells me this is the most difficult kind of Hashimoto's to treat and I may need to have my gland out.

Well, in all my years of reading on forums, I've never heard of such a thing. Hardly surprising your gland is mangled from the Hashi's, but Grave's doesn't mangle the gland. Hashi's is always difficult to treat, but if you know how it works, it's not impossible. Besides, I though the thyroid uptake test was discredited years ago. I really don't see why you should have your thyroid out. Sounds as if it'll die off soon, anyway.

Looking at your latest labs, it doesn't really look like you have a conversion problem. But, you are under-medicated, that's for sure. Perhaps if your endo gave you enough thyroid hormone, she wouldn't find it all quite so problematic.

You should be aware that slow-release T3 is not the best way of taking it. It's very easy for absorption to be compromised.

I think that rather than having some sort of polymorphism, the difference between you and mother and sister is that they are properly medicated and you aren't. Although, I think you'll find it's 125 mg, not mcg, if it's Armour. And possibly 120, rather than 125? 120 mg is two grains, which isn't an enormous dose.

[crw2ddd]

Thanks for reading my history. Yes, when my tsh was over 100 the endocrinologist who I saw said that I should wait it out because it could just be transient postpartum thyroiditis and she wanted to see how low it would go down before medicating me. I'm lucky I didn't fall into a coma. I've very likely had Hashimotos for years and years and should have been medicated much much earlier than when it reached such a critical point.

As for the t3, I was experiencing crashes in the afternoon that was asacerbated when the dose increased. When I took 2.5 initially I felt much much better and then hypo symptoms set in a month later and the doctor said I could take 5 mcg. This combination is what resulted in a tsh of .015 and a t4 above range. T3 was normal. I had a racing heart and itching and headaches which resolved when I decreased my dose. Of course this lasted for a few weeks before I was massive hypothyroid once more.

I don't know about the uptake scan...it doesn't seem like it really provided a ton of new information.

I am so-so on the 75 mcg Synthroid and the 4 mcg compounded t3 made me feel worse and I don't know why. When I took straight t3 before it helped a lot (at least it did in the mornings before I would have afternoon crashes.) Any thoughts on the reverse T3 value, I've read mixed things about it.

[danym in reply to crw2ddd]

have you tried armour and you did not do well on it?

[crw2ddd in reply to danym]

I haven't tried it

[danym in reply to crw2ddd]

i just switched to np thyroid and I have very bad dry eyes, wondering if its the np thyroid side effect or not enough.

[crw2ddd in reply to danym]

My eyes are like red and irritated more than dry per se. They feel like they have a film on them. I have puffy and dry eye lids too. Also a little light sensitive. I've been seen by an opthalmologist for over a year. Only thing that helps is t3

[danym in reply to crw2ddd]

since armour has t3 in it have you considered switching and see how you feel?

[crw2ddd in reply to danym]

I've discussed it with my doctor and she's open to it but slightly worried I guess since I'm very responsive to t3. I have a theory that I've been hypo for quite some time...overtly for two years. My body has solidified a path to distributing thyroid hormones to critical areas first -- heart, liver, kidneys, brain. The other stuff takes a backseat. So, as soon as it gets the t3 it rapidly uses it up and gives it to those areas. So, I get heart palpitations. But my skin, hair, nerves, etc still is a little hypo. That's why you need just the exact right amount and it's so hard to find.

[danym in reply to crw2ddd]

when i tried cytomel i could not do more than 5 mg, i tried 10 and got horrible heart palps, then it started to give me heartburn and I had to stop it.

[crw2ddd in reply to danym]

You don't have palps with np thyroid though? How much are you taking? I see in your previous post that you take 60 of np thyroid, which contains like 12 mcg of t3. So weird that you only had palps with cytomel but you can tolerate more than twice that amount on np thyroid. As for the heartburn -- are you positive that you're not actually deficient in stomach acid -- a lot of hashis are.

[danym in reply to crw2ddd]

yes, I get some heart palpitations, but not as bad, I do get very anxious and panicky, I don't know if that will get better or worse. My heart rate is lower on np thyroid that on the tirosint/cytomel combo. 78 compared to 88