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Haschimotos, symptoms persist, please help!
Hello, it seems like many of you here are very knowledgeable about thyroid issues. I was hoping you could please advice me? I have no one else to ask and I am really tired of all this Thyroid crap... It is affecting my life way to much and yet I can not find any doctor to help me. (I live in Sweden, I am willing to travel for help.)
I was diagnosed with Haschimotos after the birth of my daughter six years ago. I am now 43. Prior to that I was diagnosed with depression, I had weight issues, adult acne, carpal tunnel, knee and joint pain and fatigue that came and went as well as feeling constantly cold. It all started in my teens and over the years doctors said it was all depression, or my imagination. (Before the birth of my son my TSH was 4.5, nothing else was tested, after it was 18).
When diagnosed, I was put on Levothyroxine but over the course of two years my symptoms got worse. I had several misscarriages and weight gain and sever joint pain, so bad I could not walk som days. I also had anxiety and mood issues. Eventually I found a lovely doctor who tested everything and put me on Cytomel as well. I am now on 100 mkg of Levothyroxine and 25 mkg of Cytomel. I have managed to loose the weight put I eat very little to keep it off. My last labs come back with a Tsh of 0.001 and free T3 3.7 (3.3-6) and free T4 15 (10-22 pmol/l).
Even though my labs are pretty stable I feel like my symptoms come and go and I never really feel good and I am always tired. I am so tired of feeling tied and having all these symptoms come and go. Unfortunately my doctor passed away and I have not been able to find anyone else who is knowledgable. They all just question my Cytomel and think my TSh is too low, even though I feel much better now that before. However, I still do not fell fine and I worry when all my symptoms just keep reappearing.
My questions are:
1. Is it "normal" to never feel normal, never feeling all good, even when medicated, is that just part of having Haschimotos? is it normal to have symptoms even though the labs are ok and pretty consistent?
2. I have very fuzzy eyesight, it comes and goes, glasses do not help. Joint pain that comes and goes. I often feel like there is something lodged in my throat, not always, it comes and goes. Constant phlegm in throat that needs to be cleared. I often feel dizzy and like my head spins. (My bloodpressure is good). Are these issues I just need to live with? The doctors say there is nothing they can do. Should I just learn to live with it and accept that I will always be tired and have weird issues.
3. Acne. I get boil like acne around my chin and jaw and very greasy skin. Is that a thyroid symptom. My doctors say live with it. I am 43, I am so tired of having acne and never feeling clean.
4. OCD. I have always had depression and anxiety. Lately my depression is all but gone but my OCD has increased and I have so many issues. Is this thyroid related?
4. Doses. Perhaps I ned to up or down my medicin? Is it normal to have to change the dose now and then? Since I started on Cytomel the dose has been increased and it felt better at each increase. (the first cytomel dose I took was magical, within hours the fog lifted, the eyesight got better, I felt alive. That initial feeling has never been replicated but I feel much, much better on Cytomel than on only Levothyroxine). Initially on Cytomel I had heart palpitations, but not anymore. (I also have anxiety and OCD so I am not sure what is what...). I worry that too much Cytomel can affect my body in ways I will not know until it is too late.
Please advice! I just need to know if there is anything to be done or if I should just earn to accept that this is how it will be and that I will never be symptom free and feel fine. Thank you!!!!!
I was diagnosed with Haschimotos after the birth of my daughter six years ago. I am now 43. Prior to that I was diagnosed with depression, I had weight issues, adult acne, carpal tunnel, knee and joint pain and fatigue that came and went as well as feeling constantly cold. It all started in my teens and over the years doctors said it was all depression, or my imagination. (Before the birth of my son my TSH was 4.5, nothing else was tested, after it was 18).
When diagnosed, I was put on Levothyroxine but over the course of two years my symptoms got worse. I had several misscarriages and weight gain and sever joint pain, so bad I could not walk som days. I also had anxiety and mood issues. Eventually I found a lovely doctor who tested everything and put me on Cytomel as well. I am now on 100 mkg of Levothyroxine and 25 mkg of Cytomel. I have managed to loose the weight put I eat very little to keep it off. My last labs come back with a Tsh of 0.001 and free T3 3.7 (3.3-6) and free T4 15 (10-22 pmol/l).
Even though my labs are pretty stable I feel like my symptoms come and go and I never really feel good and I am always tired. I am so tired of feeling tied and having all these symptoms come and go. Unfortunately my doctor passed away and I have not been able to find anyone else who is knowledgable. They all just question my Cytomel and think my TSh is too low, even though I feel much better now that before. However, I still do not fell fine and I worry when all my symptoms just keep reappearing.
My questions are:
1. Is it "normal" to never feel normal, never feeling all good, even when medicated, is that just part of having Haschimotos? is it normal to have symptoms even though the labs are ok and pretty consistent?
2. I have very fuzzy eyesight, it comes and goes, glasses do not help. Joint pain that comes and goes. I often feel like there is something lodged in my throat, not always, it comes and goes. Constant phlegm in throat that needs to be cleared. I often feel dizzy and like my head spins. (My bloodpressure is good). Are these issues I just need to live with? The doctors say there is nothing they can do. Should I just learn to live with it and accept that I will always be tired and have weird issues.
3. Acne. I get boil like acne around my chin and jaw and very greasy skin. Is that a thyroid symptom. My doctors say live with it. I am 43, I am so tired of having acne and never feeling clean.
4. OCD. I have always had depression and anxiety. Lately my depression is all but gone but my OCD has increased and I have so many issues. Is this thyroid related?
4. Doses. Perhaps I ned to up or down my medicin? Is it normal to have to change the dose now and then? Since I started on Cytomel the dose has been increased and it felt better at each increase. (the first cytomel dose I took was magical, within hours the fog lifted, the eyesight got better, I felt alive. That initial feeling has never been replicated but I feel much, much better on Cytomel than on only Levothyroxine). Initially on Cytomel I had heart palpitations, but not anymore. (I also have anxiety and OCD so I am not sure what is what...). I worry that too much Cytomel can affect my body in ways I will not know until it is too late.
Please advice! I just need to know if there is anything to be done or if I should just earn to accept that this is how it will be and that I will never be symptom free and feel fine. Thank you!!!!!
Thank you very much! I will certainly try to get these tests done. I have an appointment in a couple of months and will see if we can do them. It is very interesting what you write, there are so many aspects of this disease and so much to look at. You have given me enough to work with for a bit! I have already started splitting my dose in two, and actually I feel slightly less tired, but only a few days have passed. I do get heart flutters in the middle of the day, before the second dose, which I didn't get before. I will keep dividing the dose and see what happens after a longer period. Again, thank you so much for your help!!!
In the words of a good thyroid doctor, "in tests done about 24 to 28
hrs after their last daily dose, most people on adequate NDT therapy have a suppressed TSH. They usually have FT4 levels that
are 1 to 1.3ng/dL, and free T3 levels that are rather high in the range or even slightly above the range." So, since you deferred taking your med until after the blood draw for those tests, your test results should be adequate, and I think we should be looking for other possible causes for your symptoms. For that reason, I suggest that you should test for Vitamin D, B12, and ferritin. Low levels of those can cause symptoms that mimic hypothyroidism. Also low levels of D and ferritin can adversely affect metabolism of thyroid hormone. Further, it would be good to find out your ratio of Free T3 to Reverse T3, as mentioned previously, since excess RT3 can cause hypo symptoms. And finally I would try to get tested for cortisol levels. The best test for that is a diurnal saliva cortisol test, done at 4 times during the day. Doctors don't usually want to do that, so instead they will test for morning serum cortisol, for which it is somewhat difficult to determine what the reference range is, since cortisol levels vary so much over the day.
Just for info, I have had hypo symptoms over the last few years, even when having FT4 and FT3 levels very similar to yours. In one case it was due to high Reverse T3 and in the second case it was high cortisol.
Do you think it will be possible to get all those tests done?
hrs after their last daily dose, most people on adequate NDT therapy have a suppressed TSH. They usually have FT4 levels that
are 1 to 1.3ng/dL, and free T3 levels that are rather high in the range or even slightly above the range." So, since you deferred taking your med until after the blood draw for those tests, your test results should be adequate, and I think we should be looking for other possible causes for your symptoms. For that reason, I suggest that you should test for Vitamin D, B12, and ferritin. Low levels of those can cause symptoms that mimic hypothyroidism. Also low levels of D and ferritin can adversely affect metabolism of thyroid hormone. Further, it would be good to find out your ratio of Free T3 to Reverse T3, as mentioned previously, since excess RT3 can cause hypo symptoms. And finally I would try to get tested for cortisol levels. The best test for that is a diurnal saliva cortisol test, done at 4 times during the day. Doctors don't usually want to do that, so instead they will test for morning serum cortisol, for which it is somewhat difficult to determine what the reference range is, since cortisol levels vary so much over the day.
Just for info, I have had hypo symptoms over the last few years, even when having FT4 and FT3 levels very similar to yours. In one case it was due to high Reverse T3 and in the second case it was high cortisol.
Do you think it will be possible to get all those tests done?
Before answering the question about the T3 med, I need to know if you deferred taking your T3 med the morning before blood draw for those tests? If not, T3 reaches peak effect in 3-4 hours and thus would give a false high test result.
OCD is a symptom of not enough serotonin. I had this symptom notably with my B12 malabsorption but also to a lesser degree when under a lot of stress and with thyroid imbalances.
Ever since I've been at the gym doing weight training and some cardio I've had to keep stopping and starting thyroxine (I too have Hashimoto's thyroiditis). Exercise increases endorphins (immune regulators) and so my immune isn't so trigger happy on my thyroid gland now. :) There is also LDN (low dose naltrexone) which does a better job at boosting endophins (prescription only).
I found a good list to help with Hashimoto's thyroiditis. For instance, I noticed drastic improvements in 3 days after taking selenium, in particular mood swings, and also saw a 15% drop in thyroid peroxidase antibodies in 6 months.
I recently started a product called Blackmore's Menopausal Day Night Relief (I'm 42 and not menopausal but my estrogen has never been high). Not only have I felt even better since starting this supplement but I've had the best night's sleep which was quite a shock. A bomb isn't going to wake me sleep lol. This supplement contains withania and zizphus which are both helpful for sleep (I believe these herbs lower cortisol). And also withania helps with thyroid hormone production. Nice. :) And while I don't have issues with wheat (the gluten in wheat) some people do so you might find this helps as well. What works well for one person might not work as well for another but if you aren't feeling great then read on...
"Effective strategies for addressing the autoimmune aspect of Thyroid disease include:
Avoid wheat.
Selenium to reduce autoimmunity.
Correct vitamin D deficiency
Improve gut flora
Reduce stress
Correct underlying adrenal issue, such as DHEA or cortisol imbalance.
Correct oestrogen dominance. Consider using Natural progesterone.
Detoxify mercury and other toxins. (Testing for mercury toxicity is available at Sensible-Alternative Clinic).
Supplement selenium to lower thyroid antibodies. Also helps with conversion of T4 to T3.
Correct an iron deficiency.
Herbal medicine Bupleurum, Turmeric, Rehmannia and others.
Other Naturopathic treatments for thyroid:
Herbal medicines Withania or Coleus to increase production of thyroid hormone. (See Best Herbs for Women article.)
Iodine (not kelp) but in LOW dose. Use with caution in Hashimoto's disease.
Amino acid tyrosine which is the building block for thyroid hormone.
N-acetyl cysteine to detoxify
Vitamin B6 and Vitamin A to improve function of the thyroid gland.
Selenium and zinc to ensure conversion of T4 to T3.
Coconut milk/ coconut oil provides medium chain fatty acids to normalise gut flora and stimulate metabolic rate.
Exercise
Sleep
Thyroid hormone supplements. See below.
Thyroid hormone supplements:
Supplementation with thyroid hormone is the standard medical treatment for underactive thyroid. Some hormone medication, however, is better than others. This is because many people to not respond well to T4 (thyroxine) alone. Thyroxine does normalise blood tests, but it cannot relieve low thyroid symptoms until is has been converted it to T3, the active hormone. Failure to make this conversion is common. (Selenium, zinc, vitamin B6 and other co-factors are required.)
Two alternative prescriptions are available:
T3 (Standard T3 or the much preferred, but more expensive, slow-release T3) used together with T4 long term or by itself for a short term correction.
Thyroid Extract (desiccated thyroid, Armour thyroid) is popular. It can be a good choice for non-autoimmune thyroid problems, or for Hashimoto's if the antibodies are not too high. High thyroid antibodies may be aggravated by thyroid extract. Thyroid extract is available by prescription from compounding chemists."
Ever since I've been at the gym doing weight training and some cardio I've had to keep stopping and starting thyroxine (I too have Hashimoto's thyroiditis). Exercise increases endorphins (immune regulators) and so my immune isn't so trigger happy on my thyroid gland now. :) There is also LDN (low dose naltrexone) which does a better job at boosting endophins (prescription only).
I found a good list to help with Hashimoto's thyroiditis. For instance, I noticed drastic improvements in 3 days after taking selenium, in particular mood swings, and also saw a 15% drop in thyroid peroxidase antibodies in 6 months.
I recently started a product called Blackmore's Menopausal Day Night Relief (I'm 42 and not menopausal but my estrogen has never been high). Not only have I felt even better since starting this supplement but I've had the best night's sleep which was quite a shock. A bomb isn't going to wake me sleep lol. This supplement contains withania and zizphus which are both helpful for sleep (I believe these herbs lower cortisol). And also withania helps with thyroid hormone production. Nice. :) And while I don't have issues with wheat (the gluten in wheat) some people do so you might find this helps as well. What works well for one person might not work as well for another but if you aren't feeling great then read on...
"Effective strategies for addressing the autoimmune aspect of Thyroid disease include:
Avoid wheat.
Selenium to reduce autoimmunity.
Correct vitamin D deficiency
Improve gut flora
Reduce stress
Correct underlying adrenal issue, such as DHEA or cortisol imbalance.
Correct oestrogen dominance. Consider using Natural progesterone.
Detoxify mercury and other toxins. (Testing for mercury toxicity is available at Sensible-Alternative Clinic).
Supplement selenium to lower thyroid antibodies. Also helps with conversion of T4 to T3.
Correct an iron deficiency.
Herbal medicine Bupleurum, Turmeric, Rehmannia and others.
Other Naturopathic treatments for thyroid:
Herbal medicines Withania or Coleus to increase production of thyroid hormone. (See Best Herbs for Women article.)
Iodine (not kelp) but in LOW dose. Use with caution in Hashimoto's disease.
Amino acid tyrosine which is the building block for thyroid hormone.
N-acetyl cysteine to detoxify
Vitamin B6 and Vitamin A to improve function of the thyroid gland.
Selenium and zinc to ensure conversion of T4 to T3.
Coconut milk/ coconut oil provides medium chain fatty acids to normalise gut flora and stimulate metabolic rate.
Exercise
Sleep
Thyroid hormone supplements. See below.
Thyroid hormone supplements:
Supplementation with thyroid hormone is the standard medical treatment for underactive thyroid. Some hormone medication, however, is better than others. This is because many people to not respond well to T4 (thyroxine) alone. Thyroxine does normalise blood tests, but it cannot relieve low thyroid symptoms until is has been converted it to T3, the active hormone. Failure to make this conversion is common. (Selenium, zinc, vitamin B6 and other co-factors are required.)
Two alternative prescriptions are available:
T3 (Standard T3 or the much preferred, but more expensive, slow-release T3) used together with T4 long term or by itself for a short term correction.
Thyroid Extract (desiccated thyroid, Armour thyroid) is popular. It can be a good choice for non-autoimmune thyroid problems, or for Hashimoto's if the antibodies are not too high. High thyroid antibodies may be aggravated by thyroid extract. Thyroid extract is available by prescription from compounding chemists."
3 Comments
Thank you for all that info! Did you manage your OCD with seretonin? I was told it was thyroidrelated too, but since my thyrod labs ar eok it shoudl be better, but it keeps getting worse. Then again, the depression is better.... My doctor says I cannot have it all, but I think I should be able to feel better in all regards.
The OCD goes away when I correct those issues that affect my serotonin production. My doctor said something like that too which is an excuse for I have no idea how to fix you. :)
I would add that yes you need vitamin B12 which wasn't mentioned on that article. I noted my cellular thyroid issues worsen when I don't have enough B12.
I think the answers to your questions boil down to this. It is not normal to continue to have all those symptoms if adequately medicated and other important co-factors are optimized as well. Getting to be euthyroid can be more than just getting Free T4 and Free T3 to optimum levels.
So, a couple of questions for you. Do you split your dose of Cytomel and take half in the morning and the other half in the early afternoon? Did you defer your Cytomel dose until after the blood draw for those tests? Have you been tested for Vitamin D, B12 and ferritin? Have you been tested for cortisol level, preferably a diurnal saliva cortisol test at four times during the day? If not, have you at least been tested for morning serum cortisol level? Have you been tested for Reverse T3, along with Free T3, so that the ratio of Free T3 to Reverse T3 can be determined?
So, a couple of questions for you. Do you split your dose of Cytomel and take half in the morning and the other half in the early afternoon? Did you defer your Cytomel dose until after the blood draw for those tests? Have you been tested for Vitamin D, B12 and ferritin? Have you been tested for cortisol level, preferably a diurnal saliva cortisol test at four times during the day? If not, have you at least been tested for morning serum cortisol level? Have you been tested for Reverse T3, along with Free T3, so that the ratio of Free T3 to Reverse T3 can be determined?
5 Comments
Hello and thank you very much for your response. No, I do not split the medication, I take it in the morning at least one hour before food. I will try dividing it into two doses (only the Cytomel or the Levothyroxine too? Honestly, since Levothyroxine did nothing for me alone, I am wondering why I need it, will not only t3 work?). Yes, I take the blood test in in the morning without taking medication that morning. Yes, the vitamin and iron levels are ok now, they were low, but last check they were in range. Or should they be optmized more somehow? No, I have never tested cortisol. I can not find any doctor to do them or who even 'believes' in their relevance in Sweden (it is hard enough getting the Cytomel prescibed and T3 tested). What does the "the ratio of Free T3 to Reverse T3" explain? I have not had it tested. I will try to get it done.
Only need to split T3 meds into two doses. that is because the T3 effect peaks in 3-4 hours and then is diminished over that same time. Thus splitting into two doses will help even out the effect over the day.
Sorry, I intended to keep going. This new format is very confusing and aggravating. Under some conditions, T4 is converted into excessive Reverse T3, which can offset the Free T3. The ratio of Free T3 to Reverse T3 is touted as being the best measure of tissue thyroid levels. Metabolization of thyroid hormone at the tissue level drives all body functions. I would not stop the T4 med. Since your Free T3 is lower than optimal for many people, I would want to increase your dose and continue to do so until symptoms are relieved. If increasing your T3 med and Free T3 level doesn't work to relieve symptoms, then that is when I would get the Reverse T3 and free T3 tests done, along with cortisol. Two other factors that are important ot optimize are Vitamin D, B12 and ferritin. If not tested for those, I would try to get those done now. D should be about 55-60, B12 in the very upper end of its range, and ferritin should be about 70 minimum. If they prove to be lower, then you could supplement those as needed to optimize.
Thank you so much for taking the time to answer! I will statt by splitting the T3 into two doses and see what happens. Is there any danger in increasing the T3? Do you know what a normal T3 dose is, if there is such a thing? What is the optimal Free T3 level in your opinion?
LOL gimel. So i'm not the only one having issues with this format.
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