-TSH getting worse and worse over the past few years despite both thyroxine and increasing T3 medication
Background:
-Early-30s female.
- DIAGNOSIS: Sub clinical hypothyroidism (TSH above suggested range but T3 and T4 within range) first flagged 5 years ago. I had been though a lot of mental stress and physical illness for a couple years prior. TSH has gone from 3 to 6.5 over the past five years and has never improved
- OTHER INFO RE: THYROID TESTING: No thyroid antibodies, No family history of thyroid problems, Reverse T3 is ok
- MEDICINE: Started on 5mcg T3 3 years ago which gradually increased to 30mcg T3. Added 50mch Thyroxine 6 months ago. So daily medicine currently is: 50mcg thyroxine and 30 mcg T3.
RESPONSE TO MEDCINE: Since adding thyroxine TSH has risen from 5 to 6.5 over six months. T3 and T4 have stayed about the same (in range, but Im told not optimal end of range)
OTHER (MAYBE RELEVANT) RESULTS FROM DR TESTS:
- Low Androgens - below range free testosterone and above range SGBH (no doctor has focused on this at all though), low DHEA (about 2.4 (range 1.7-11ish
- Some cortisol issues (raised at night, low in morn)
- Did have insulin resistance but last tests show this is ok now
- Low ferritin – last test had 15 (range is 15-200)
- Vitamin d, bs etc all much better and good, ive been supplementing for a long time.
- High cholesterol
SUPPLEMENTS:
- Herbal Thryoplex (thyroid support herbs started in december), adrenal adaptogens, supplements for vitamin and mineral defficiencies such as Vit D, zinc, B vitamins , Vitamin C, magnesium etc… berberine for insulin resistance...
QUESTIONS:
- Ive had some frustrating experiences with the Doctors and am hoping I can get some advice
- Why the medicine is only increasing my TSH (or rather, why my TSH is increasing despite the medicine). My T3 has stayed the same even with 3 years of T3 supplementation.
- What the actual cause might be behind the raised TSH if not hashimotos, and not full hypothyroid yet. I dont think my hypo is primary problem, i suspect it is more a side effect of my adrenals? Has anyone managed to just treat adrenals and it healed the thryoid? or better to stay on mediaction for thyroid.
--Also very weird is complete inability to lose weight, Ive had to reduce my calories and up my exercise over this five year period so much. BMI is upper end of normal range but no matter how many cleanses (including 4 month gut cleanse with no cheats), calorie restriction or exercise I do my body doesn’t change. I can average 500-800 calories for months, never going over 1000 and burn hundreds of exercise calories (I do about 2 hours 4-5 times a week (one HIIT hour / run and one strength/ walk/ yoga). People won’t believe I’m being accurate representing this but I really am.
If anyone has any ideas based on their own experience – id be so grateful for any insights!
Written by
PJaneH
To view profiles and participate in discussions please or .
The first thing that jumps out at me here is that you're taking Herbal Thryoplex. Does it contain iodine? If so, that could be the source of your problem because iodine is anti-thyroid. That could cause your TSH to rise.
Second thing is, your low-calorie diet and excessive exercise, neither of which is recommended for hypos, because they can make you more hypo. 500 calories is not enough to support life! It will put your body into starvation mode, which means that the body will cling on to every scrap of fat and every calorie it can. That sort of diet is not recommended for anyone, let alone a hypo. And, this could be responsible for raising your TSH. My advice to you would be to eat more and exercise less. If you are hypo, your weight-gain has little to do with too many calories or too little exercise, and everything to do with low T3.
Also, I would advise you to get copies of your blood test results and post them here, so we all know exactly what we're talking about.
hi thanks for your response! im new here - do you mean just summarise them by typing them out? i dont want to put a photo or anything... Ill edit the post
I started taking thyroplex (it does have iodine) on the advice of the latest doctor who I switched to in December. At that point my TSH was 5, now it is 6.5 so it may have contributed to worseing but there must be something else going on too bc it was already getting worse. I will stop taking the thyroplex and see how my next test goes
the dieting is a vicious cycle, it has gotten more extreme over time as my body wouldn't shift weight but I do understand that it is undermining my system and making it worse. I have decided to focus on eating 1200 calories and cutting out the aggressive cardio>
This all decline all started about five years ago when i had some poor adrenal symptoms and TSH about 3, was going to a naturopath and was eating super well for about a year but not losing/ gaining weight even. so i started to get more and more restrictive and then i realise it is probably exacerbating the underlying issues. But my diet didnt intially cause the thyroid issues, my diet and exercise was a response to a total slow down of my metabolism.... i am now going to just focus on healing my body not weight loss!
Yes, the results and the ranges. Like this, for example:
TSH 6 (0.2 - 4.5)
A lot of doctors believe that all you need to do for a thyroid problem is throw iodine at it. That's because they don't really understand how thyroid works. Iodine used to be used to reduce levels of thyroid hormone when people were hyper, before they had things like carbimazole, so it's really not a good thing to give a hypo, unless the hypo is caused by iodine deficiency. And, to know that, you need iodine tested, but doctors just don't do that.
I would say that even 1200 calories is too low. You need more like 2000. But you shouldn't really be counting calories at all. It's not natural. Better to count nutrients. But it certainly is unlikely that your diet caused your thyroid problem.
When i was looking at my results to post i realised my past doctor actually did do a 24 hour urine test (that same doctor never tested my iron in two years though) and i had low iodine but he never mentioned it. My number was 52ug/L (>100) borderline mild/ moderate defficiency (severe is 20 or less). do you know if that means i should take iodine/ or am ok with thyroplex or similar?
You have been on 30 mcg T3 since early 2016 and 50 mcg Levothyroxine since mid 2018, right? So, that means that every day since early 2016 you have been getting about 15 mcg iodine from your T3; and every day since mid 2018 you have been getting about 33 mcg iodine from your T4. So, now you are getting about 48 mcg iodine every day plus what you've been taking in your multi, plus whatever you've got from food. And, it hasn't helped, has it. So, no, I don't think you should continue taking any form of iodine supplement.
Supplementing iodine is not about just taking a pill, anyway. It needs a specialist that knows about iodine deficiency to over-see it. There are protocols to set up and follow if you don't want to make a bad situation worse. But, it's very difficult to find a doctor that knows about that sort of thing. If you find one, consult him, and ask what he things, but don't continue supplementing on your own. I don't think your hypothyroidism is due to iodine deficiency, anyway.
Her very low ferritin isn't helping her either is it? Correct me if I'm wrong, but she won't be utilising that thyroid hormone properly having such a low ferritin level?
I think youre right! I only noticed my low ferritin on the most recent blood test results that came this week because the lab made a note about it being low. then i googled it and saw a link. from what i gather. T4 goes to T3 then T3 utilised by cells. If people cant convert t4 that can cause levothyroxine to have less impact or negative effects, but i didnt understand why i never felt different on increasing dose of T3, and from what i read this week low ferritin can hinder T3 use by cells? So that might be a problem for me. Looking back at an old test from 5 years ago my ferritin was 30, and 22 a couple years ago, but i dont know why the doctors never flagged it especially because they have been so thorough. I asked the doctor this week what to do and she didnt seem concerned. should i take iron or something else?
Doctors didn't flag low ferritin because they know nothing about nutrition. They believe that if it's anywhere in the range, it has to be ok. They just have no idea.
It is said that the best way to raise ferritin is to eat liver once a week. But if you can't do that, you need to take iron supplements, with vit C.
You need your ferritin to be around 70-80 for optimal thyroid performance. The best way to raise ferritin is from eating iron rich foods, blood foods basically. I can't stomach liver so I make sure to have some chicken or duck liver pate every week and I eat black pudding with bacon and egg at least once a week, preferably twice. I also take an iron supplement, with vitamin C for absorption, every day at the moment. It's important to recheck from time to time as too much iron isn't good either. It's a Goldilocks mineral.
Please stop dieting and get your thyroid meds sorted first. Even 1200 is a diet. 1500 is about the level for a woman I think. You can still exercise, but not extreme.
Funny everyone here said iron and the integrated doctors who charge me 400 bucks an hour overlooked it for years! Also when i i told my doctors about my diet and exercise (it was really the main reason i could tell something was wrong in the beginning because it was so strange so that's what i would go in and talk about as a symptom) they just said stuff like that id put on lots of weight if i ate normally. deep down i knew it was doing more damage. I will focus on healthy diet and get some iron supplements and make sure my doctor retests my ferritin. Thank you so much for helping out with advice!
I agree, thank you greygoose! i agree and am going to just focus on eating healthily again. its been a horrible way to live all these years anyway. is supplementing iron ok to do? i have read it can be dangerous
It's going to be fine for you at this stage. Just retest every 3 months to monitor. Coupled with an iron rich diet you should notice changes. Once you get to a more sensible level you can probably manage it with diet alone.
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. These four vitamins must be optimal for good thyroid function
Your ferritin is far too low. What are you doing to improve this ?
Low vitamin levels are extremely common, especially if Thyroid antibodies are raised
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. Do not take Levothyroxine dose in the 24 hours prior to test, delay and take immediately after blood draw. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)
If also on T3, make sure to take last dose 8-12 hours prior to test
Is this how you do your tests?
What are your TSH FT3, FT4 results and ranges?
Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies
Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random
If antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).
About 90% of all hypothyroidism in Uk is due to Hashimoto's.
Low vitamins are especially common with Hashimoto's. Food intolerances are very common too, especially gluten.
So it's important to get TPO and TG thyroid antibodies tested at least once .
Hi, thanks for taking the time to respond in such detail! my post was a bit messy with results scattered through, but I have been going to integrated GPs for the past few years- they are very comprehensive in testing. they do all the thyroid tests (t3, t4, rt3, tsh) and hashimotos (i havent had antibodies present). I have also had gut analysis, regular fasting insulin testing (not fun!), cortisol testing, regular panels for vitamins and minerals etc... they are thorough. I have been deficient in Vit D and zinc in the past but have taken a bunch of supplements for ages which has left those and my B vitamins in good range. My ferritin is always at the very low end but they never have mentioned it. last trip (this week) when it came back as 15 I asked what I should do but the doctor didnt seem like it was a big concern. I have read iron supplements can be problematic?
the other thing that i wonder if is effecting my really low free testosterone
I read that T3 is like 4 x levo, so wouldnt that be equivalent to 120 mcg levo plus the 50mcg straight levo dose?
I only ever had subclinical hypothyroidism which is why my dose might be low (always t3 and t4 in range) but with my TSH just getting worse on medicine i want to get it going again
Thank you so much this actually makes a lot of sense for me and I really think this ferritin could be a key for me, as even the T3 has made no difference. yep - the doctors have been super thorough with testing (I edited my post to put in a selection of results for TSH, ft4 and ft3 over past few years at the top- they have also tested for antibodies and reverse T3) and also thorough with supplementation... except they had never said anything about my ferritin and looking back it has been low for years... weird considering all the random obscure things they have suggested and tested for, like cryptopyrolles (?), copper overload etc etc... (none i was found to have) but somehow they have overlooked iron and only i flagged it this last appointment because the lab noted ferritin was too low.
I take vitamin c, i will focus on getting lots of iron in my diet. can people get the iron levels up with diet or do most people with thyroid issues need some supplementation to get ferritin to a good level?
Have you ever had both TPO and TG thyroid antibodies tested?
Essential to know if cause of hypothyroidism is due to autoimmune thyroid disease
If antibodies are high then look at gluten free diet
If antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).
About 90% of all hypothyroidism in Uk is due to Hashimoto's.
Low vitamins are especially common with Hashimoto's. Food intolerances are very common too, especially gluten. So it's important to get TPO and TG thyroid antibodies tested at least once .
yep done those and no antibodies. I really have a feeling mine is not a primary thyroid issue but from years of stress and physical illness. I feel like my whole endocrine system is in a bit of a cascading crisis starting from a few years of stress
i pretty much have been on a gluten free diet for years (occasional cheat)
i take all the medicine in the morning when i open my eyes and then dont eat for at least an hour, and try to wait 3-4 hours before supplements. the doctor suggested i split the T3 but honestly it is too hard with all the other supplements i have to get in in the day. i tried for a few weeks to take the T4 at night bc i read that could help but i didnt like it and went back to morning. I have always done testing fasting in the morning, so it would be 24 hours from any previous dose - so next time i should aim to have my T3 dose the night before the test when I go to bed?
what should my ft3 be? it is about half way point of range now? i thought it was ok
So 24 hours is fine for Levothyroxine gap, but when on T3 as well the day before split your dose and take half in morning and half twelve hours before blood test (9pm)
Many on here do take T3 just once a day. But for some/many, a split dose works better as it can give smoother steadier levels
I can't even tolerate dose twice a day. For me, 3 doses per day, every 8 hours works brilliantly. But as I have Hashimoto's adrenal issues are common
thank you so much for all your responses slow dragon! i am going to focus on my iron levels and will do as you say for the next test coming up! I will try to split the dose... the ones i have are slow release. is that the same as yours? do you do anything for your adrenals at the same time as your thyroid?
We aim for T3 to be in the top quarter of the reference range. Yes, next time arrange to take your T3 8-12 hours before your test. You might want to split it for that day to make it easier.
The best way to raise ferritin is from food. You can also cook in a cast iron pan (I have an iron frying pan) or add a Lucky Iron Fish to pans you are cooking vegetables etc in. You can find those on Amazon.
I too struggle with ferritin. It's hard. Especially for me as I am having a darn difficult menopause and take HRT which I struggle with because I bleed a lot on it. The past 6 months have been a more or less continuous period! Whilst trying to raise my ferritin level!! I hope I am about to solve that issue though by switching to a different progesterone method in early February. That should stop the bleeding. I have had low iron and ferritin most of my adult life at one time or another. It's something you have to keep constantly on top of.
Oh you poor thing, that sounds absolutely awful and frustrating! I really hope the new treatment brings you some relief and improvement in symptoms. Honestly so grateful for all your advice. Wasn't life simpler when we could go about things without being aware of the delicate balance the hormones require and the havoc they can wreak!
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
When should you be subscribed medicine for an under active thyroid?
Lab results worse and help needed to get off the Seesaw!
Thyroid results - advised to get bone scan
Do you need less thyroid medication as you get older?
General help and advice on sorting my thyroid
