I have been on synthroid for around 10 years and have hashimoto's. If it is not optimal, I usually adjust my meds to make optimal. I have had periods of time where I would just leave it too because my levels sometimes change from hypo to hyper without changing them. But I do my best.
But as time goes on, I just feel worse and worse. I have tried different T4, T3, and dessicated with no luck. I have had nearly every test under the sun and everything just comes up normal. I have tried many supplements, medications, therapy, lifestyle changes, situation and job changes, and I only continue to feel worse. Only thing that helped was b12 but it only fixed half the problem.
I feel so weak, fatigued, constipated, mentally and physically slow, short of breath. I don't really enjoy much because I am so exhausted. I feel like I'm sedated and severely sleep deprived but I'm not. I have to push myself to do anything and I can't wait to do nothing again. I wake up exhausted and just stay that way all day. Despite this, I don't have depression, it went away with my b12 injections. But I am becoming angry and frustrated and I am so so over dealing with this that my thoughts are becoming dark.
I heard some people say that if your levels are optimal, then it can't be thyroid related. But I have nothing else going on it seems so I don't know what else it would be..
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KittyKitten
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No, not necessarily. You had an ultrasound with the Hashimoto's ? I am only asking because some nodules do not cause issues, and they can be quite common.
I just happened to have two of mine that affected my health in ways that you are speaking about, that is why I am asking.
I didn't absolutely 100% until a total thyroidectomy. Everyone was at about 95% sure.
I knew I had multi-nodule goitre for a while. I was just monitoring until a endocrinologist did a physical test (hands over head, chin slowly down) and I could not speak or breathe properly.
Plus the ultrasound showed the two largest (3.2 and 3.6) where sort of bookending my trachea causing compression.
Not all symptoms are gone, so there is still was another issue/thyroid issue (so now meds) But many have been alleviated.
What do you mean by 'optimal'? If you still feel symptoms then your thyroid status is not optimal, whatever the blood test results may say. Optimal is not a number, it's a feeling.
So, first of all, do you have any recent blood test results to share with us - with the ranges, of course? Have you had your nutrients tested: vit D, folate, ferritin? You're having B12 shots, which is good, but are you taking a B complex as well, to keep the Bs balanced?
There are so many possibilities as to why you're not feeling good. But, without some numbers - results/ranges, dates/doses - we won't have a clue what's wrong.
I mean my numbers are optimal. And if they are not, I usually adjust my meds to make them optimal. But whether they look less optimal - TSH over 2, or are around 1, or are 0, then I always feel the same. I have posted my results many times in forums and no one ever says anything is wrong with them unless my TSH is slightly high or low. T3/T4 usually near mid to upper end of range. I have them posted in other posts I made in the forums previously, so I didn't think to post them again when I have nothing new to show.
My most recent blood test was TSH only, which was 0.03 (low). I now decreased my meds and feel the same as I did before. I haven't had a new blood test yet. But this always happens with no change of symptoms.
I have had all vitamins tested, and posted previously, all good. Or have improved. Ferritin was in high 70s (went up from 40s last year), folate above top of range, vit d near middle of range. But still supplenting and sitting in sun now that it is nice.
I was taking b-complex, vit d, prenatals. B-complex makes me dizzy if I take for more than a few days. I stopped all vitamins, except d, and did a vitamin IV a few weeks ago. Which made me feel extremely awful.
I know there are lots of possibilities, but I don't think these are it unless you can just feel terrible forever because of hashimoto's
I do really appreciate your reply though, just going through a rough time right now
So, you haven't had any labs done for about 10 months? A lot can happen in that time.
Forget the TSH, it doesn't make you feel anything whether it's high or low. And just testing TSH when it's that low, is pointless. It doesn't tell you anything. So, you shouldn't reduce your dose on the basis of the TSH only.
Symptoms are caused by too little, or too much T3. Everyone on that last post was suggesting you reduce your dose a little. Apparently, that hasn't helped. On the other hand, you could be someone that needs their FT3 slightly over-range to feel well.
If you're taking vit D, are you also taking magnesium? The two work together and taking vit D withot magnesium will deplete your magnesium - and it's probably already low.
Was there iodine in the prenatal? That could be making you feel bad.
I doubt having Hashi's will make you feel terrible forever, but it can be difficult while you still have a working thyroid that is periodically being attacked by your immune system, because hormone levels will fluctuate. But, eventually, the thyroid will be completely destroyed.
I know there are lots of possibilities, but I don't think these are it
This was my post from ~7 months ago:TSH - 0.66 (0.20 - 4.00 mlU/L)
FREE T4 - 18.7 (10.0 - 25.0 pmol/L)
FREE T3 - 5.3 (3.5 - 6.5 pmol/L)
Then my doctor did TSH only a few months ago and it was 0.03. He usually does them all but just did TSH I think because I was going in for other bloods not just for thyroid. I was supposed to get another thyroid blood test when I was to try dessicated thyroid again but couldn't tolerate it. It felt like someone dumped a million hormones at once in me and I went psychotic. So that's why I didn't do it yet.
I guess I could try the T3 again, but I do feel like I'm going in circles at this point. I also don't know if it is good to take when pregnant and I would like to try asap because I'm running out of time on my biological clock. But the times I have tried I haven't been able to get pregnant. So I dunno.
And I did try magnesium but I feel like I was getting side effects so I stopped. Did some epsom salt foot baths, not sure if it helps but I can't tolerate the pills. I bought foods with magnesium though so I could get it naturally. Also I think it was in my IV too.
And I think there might be iodine in the prenatals. But even before I started taking them or stopped for months, I felt the same as I do when I take them.
And I have no idea what it is. Some digestive problem maybe? But I'm fobbed off by doctors. Lasting brain/body damage from 15 years of malnutrition maybe? A cellular/mitochondrial problem? A cellular deficiency of a vitamin? An autoimmune illness not recognized? Maybe T4 medication making me ill? Hashimoto's making me sick? Some mystery illness? I have no idea and I have no idea how to find out. I feel doctors are basically done with me and unless I win the lottery and can go to the mayo clinic or some other clinic dealing with unknown issues I may never know. I could even be way off here, I am just so lost at this point :(. I feel like everyone around me is just healthy and fine, or they take their meds and move on. But I am left here sick and it's killing me
Well, they could be higher - a lot of hypos need them a lot higher.
NDT doesn't suit everyone. It didn't suit me. I wasted far to much of my life insisting that it had to work for me because so many other people felt great on it, but I just didn't. I would never try it again.
There's no reason why you shouldn't take T3 when pregnant. As long as you have good levels of T4, because it's the T4 that crosses the blood/placenta barrier to feed the baby.
Epsom salt baths are excellent! Or, you could get a magnesium skin spray. Of course, it would be wonderful if we could get all our nutrients from food, but we're hypo, and we have low stomach acid, so that makes it very difficult to digest food and absorb nutrients. Most people are deficient in magnesium, anyway, because soils are depleted.
You are very unlikely to need iodine. If you are taking thyroid hormone replacement, you will be getting iodine from that - plus a certain amount from your food - and, if you're taking thyroid hormone replacement, you need less iodine, not more, because your thyroid won't be making any more hormone - which is what it needs it for. And, excess iodine can cause all sorts of problems. Which is one of the reasons hypos should avoid all types of multi-vits.
And I have no idea what it is. Some digestive problem maybe?
Well, if you're hypo, you're more than likely to have digestive problems, because, as I said, your stomach acid is probably low.
Lasting brain/body damage from 15 years of malnutrition maybe?
That could very well be true for B12, but I'm not sure other nutritional deficiencies can cause permanent damage.
Maybe T4 medication making me ill?
That is a possibility. It did me. Have you tried T3 only?
Hashimoto's making me sick?
It's not so much the Hashi's that makes you sick, it's the resulting hypothyroidism. And the fluctuating levels of thyroid hormone between hypo and 'hyper'.
I feel like everyone around me is just healthy and fine, or they take their meds and move on.
Not everyone. There are thousands of us on this forum, and other forums like this one, who aren't healthy or fine, and can't just take their meds and move on. And, you're right, doctors don't care. They just dismiss us as nut-jobs, or something. If we don't fit into their narrow little compartments, it has to be our fault. But, it rarely is.
I’m going on 6-7 years now with problems. About 4.5 years ago they were bad enough I had to stop work. I have had hypothyroidism for over 20 years at that point, also about 20 years worth of sleep apnea. I started seeing different specialists to try to figure out what was going on. One of the first up was a gastroenterologist and due to my age at the time he did a colonoscopy. Two minor polyps found, doc said they were removed and nothing to worry about. Then next up, the endocrinologist discovered I had Hashimoto’s as my antibodies were in the 3000s (I believe that’s right). The rheumatologist ran seres of labs and finally concluded I had fibromyalgia and ME/CFS. Next up was a neurologist/pain doctor. He did a full body scan, mris, and x-rays. He indicated I had a few degenerative discs; one in lower back and 3 up in the thoracic area (Ts 4,5,6). I also ended up going to a urologist because I had low testosterone. Then finally, I went to see a psychiatrist because of the depression I had from being so sick.
The gastro doctor, after removing the 2 minor polyps said I was good to go as far as he was concerned, and to come back in 5 years.
The endocrinologist told me there was nothing I could do, to just keep on taking my levothyroxine. Wow, I was floored when he said that.
The rheumatologist prescribed me Lyrica and Cymbalta for the fibromyalgia. After some trials I finally ended up on the max dosage of each 60mcg 2x daily for Cymbalta and 150mcg of Lyrica 3x a day.
The neurologist/ pain doctor put me on OxyContin and Oxycodone, which helped tremendously at first but then as my body adapted to it I needed more and more until he could not raise the prescriptions any longer. So the next thing was a spine nerve stimulator inserted into my back to help with the upper back and neck pain I was having (those were the most painful areas on my body at the time).
The urologist prescribed me testosterone shots, 1ml every 7-10 days.
The psychiatrist ended up putting me on Wellbutrin for a couple years. I started feeling better about things in my mind and got off it.
Wow, it hurt me just typing all that in. Now somebody can ask me about my blood tests and vitamins, will respond later, I’m tired now.
I have had varying frequncies over the last 2 years. For the last several months I was doing every other day, just went down to twice a week as found it hard to tolerate. Maybe gonna go down to 1 per week soon to see how I feel. Folate is over top of range
Feel free to ignore everything below. Just throwing it all out there since you're looking for alternative ideas.
A lot of what you describe can be lingering B12D symptoms.
From my own experience, b12 & thyroid interacted. It took me 2 years of twice daily injections until I no longer felt like death. Then another 2 years and very slow t4/t3 raises until I could tolerate a decent amount of thyroid meds. Over-replacement symptoms included, paradoxically, exhaustion and brain fog. I kept thinking i needed to increase thyroid meds, whereas lowering actually helped, at least until I had properly healed from b12d. My labs were terrible, Free Ts all very low, but I went by how I felt and what I could tolerate. I restarted at 12.5 mcg T4 & 6 T3 and increased very slowly. Of course I was very hypo but it was much more tolerable than the exhaustion and craziness that "over-replacement" brought.
Look up over-replacement symptoms if you haven't already. A lot of times they sound just like hypo symptoms. I realize you said you've tried lowering meds before and it left you tired, but now that b12 is in a better state you might find you do ok on a lower dose.
And, importantly, the brain fog and fatigue and exhaustion may actually be lingering low b12 symptoms that haven't quite resolved, rather than hypo. And by trying to fix that by taking more thyroid meds, it's making you feel even worse because your system can't handle it right now.
Other suggestions:
I'm one of those people that need 5mg folic acid daily, despite good levels. If I stop, I go downhill quickly. Something to consider.
You might consider trying hydroxo b12 rather than cyano. It's available by prescription in the US, or order from Germany. Some people just don't do well on cyano, for whatever reason.
Get B6 levels tested. Some people get b6 toxicity very quickly on supps. .. since you mention issues with the B complex.
Diet, with thyroid patients, is a HUGE thing to consider also. You say everything else is fine but you still don’t feel good. Many times thyroid patients have gut issues and food allergies, like gluten and so forth. That can rob you of energy and total well being too. It’s something to consider as well.
Thank you. I did gluten free for over a year, did food intolerance testing, ate healthier, low diary, did low fodmap, etc. But I still feel the same. Low fodmap helped with some digestive symptoms but that's the only benefit I have seen
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