I am fatigued and want to sleep every 3-4 hours. I am a Hashimotos sufferer and was diagnosed 4 years ago. I have been on T4 Levo ever since. I have increased from 100 msg to 125 mcg due to increased TSH from 0.5 to 3.2 (range 0.27-4.2) under Endo advice 6 weeks ago.
My blood test results 6 weeks ago were Free T3 3.9 (2.8-6.8), Free T4 12.5 (12-22), Total T3 1.6 (1.3-3.1), Total T4 78 (59-154), AB TG 9 (0-4.1), AB TPO 146 (0-5.6), Iron 26 (6-35), Ferritin 51 (30-400), Folic Acid 24 (8.8-50), Vit B12 543 (211-946), VIt D3 96 (sufficiency is 75-250). D2 under 2.7, Total testosterone 11.7 (6.6-25.7).
I had prostate surgery 3 months ago and am suffering from the cold. I thought i had achieved a balanced T4 Levo mono-medication and had controlled my TSH at 0.5 but I am more fatigued than ever. I have dull headaches and weekly migraine auras (first day back at work after weekend). I am morose, irritable, and uninterested in anything. Any thoughts or comments on the right treatment will be greatly appreciated.
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Adam10
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What you need now is your thyroid tests repeating, this should be done 6-8 weeks after any change in dose.
Do you need to change to combination Levo/T3 or NDT? You can't know that at the moment. TSH needs to be down to around 1 and FT4 higher in range so that we can see how well you convert T4 to T3. If FT4 is high and FT3 is low that suggests poor conversion, if they are balanced then conversion is good.
Your surgery may have upset things temporarily and you may need to give it time for everything to settle down again. But you have Hashi's so test results/symptoms will fluctuate anyway.
Ferritin 51 (30-400)
This is too low. Ferritin is recommended to be half way through range so you should work on improving that. You can help raise your level by eating liver regularly, maximum 200g per week due to it's high Vit A content, also liver pate, black pudding, and including lots of iron rich foods in your diet
Total Vit D is the sum of D3 + D2, yours is around 97 and that just about reaches the level recommended by the Vit D Society of 100-150nmol/L, the Vit D Council recommends 125nmol/L.
Vit B12 543 (211-946) - I'd need to know the unit of measurement to comment on that - pmol/L or ng/L or pg/ml
Folic Acid 24 (8.8-50)
You're nearly there with that, recommended is at least half way through range so 29.4+ with that range. Eating lots of folate rich foods can help.
Fantastic comments SeasideSusie. Thank you so much. I have re-read your comments many times and will implement each of your points. I’m glad there’s something that I can do without resorting (yet) to T3. I have read about how complicated T3 is to manage so am relieved I can try other things to seek improved quality of life.
B vitamins best taken in the morning after breakfast
Recommended brands on here are Igennus Super B complex. (Often only need one tablet per day, not two). Or Jarrow B-right
If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 3-5 days before any blood tests, as biotin can falsely affect test results
Ferritin could be improved, needs to be above 70 really, look at eating iron rich diet including liver or liver pate once a week. Plus vitamin C may help improve iron absorption
Come back with new post once you get bloods retested after 6-8 weeks on new higher dose
Have started taking vitamin B Complex today. Couldn’t get B complex with biotin but there was a separate iron and biotin supplement - is that similar thing?
I have had two general anesthetics (GA) in last 4-5 months. That might explain things. Didn’t realise that GA had such an effect.
Will lookout for the B complex brands you mention when I next visit U.K.
You need to increase your dose of Levo, don’t introduce T3 without checking first that you can’t get well on a higher, perhaps much higher dose of Levo. T3 is much trickier to manage.
You could try a 25 mcg increase per day, or every other day. It’s no good adjusting by the test, that way you get perfect test results only. What you need is to feel perfect, so how you feel has to lead treatment. You may have to lead endo, I think they are all worried about negligence claims. Sometimes tsh has to be supressed in order to feel well, but this is best avoided if possible, but not at the expense of feeling poorly. Headaches can be caused by undertreatment and dose changes. You may find that you can feel a change in position/size of your eyeballs with different treatment levels. No doctor will believe that! But it explains eyesight changes. Best to get optimal first before spending much on sight test and correcting vision!
Thanks Aurealis. Have started today on an increased dose of 125/150 mcg on alternate days as you and others suggested.
Yes am beginning to lead my Endo now as you’re right, they are not ‘with it or us’, they feel they must follow standard medical practice.
That is amazing - change of position it size of eyeballs! But it explains my sudden blurred vision when taking new or altered medication. I’ve been aware of this for a while and have avoided sight tests while this change was occurring.
Thanks yhickfoe. I appreciate your comments. Yes you kindly responded to my earlier post about these test results. I have since obtained the FT3 and FT4 figures but have also continued to go downhill hence my follow-up post.
I think I will increase my T4 Levo to 150 mcg which is where I was before and follow up with vitamins snd iron rich foods as per other kind comments on this forum.
I currently work in Middle East so not sure if I could get T3 here. I’m retiring soon to low-cost Thailand -partly because of my fatigue but I’m nearing retirement age anyway - so am hoping I could get T3 there and investigate a combo-treatment under an Endo if I can find a suitable one there.
Great to hear that a combo treatment works for you. Is it difficult for you to manage a combo treatment?
Hi Adam10. I’m never a fan of treating a symptom and much prefer to sort out the cause but I have been having these headaches for over 2 years also. Every week without fail on driving to work. It would start with peripheral vision and turn into full on eye ache and headache. I recently went to the opticians and long story short she said I had very dry eyes and prescribed an eye gel called viscotears. Sterile eye drops for dry eyes.
I know it’s part of being under treated for thyroiditis where the body uses water wrongly causing dry skin, constipation etc and my gp and I are slowly working on increasing dose but I seriously couldn’t go on with the headaches and eye pain / vision problems which were sometimes preventing me driving to work.
If I were you I’d go see an optician about your eyes especially as you are in a warmer climate.
I’ve only used the gel for a week and it’s made a huge difference. I would have insisted before I started using it that I didn’t have dry eyes but it’s been a game changer for me.
Not fixing the true problem of undertreated thyroid but treating a symptom and getting through without a debilitating headache.
Thank you for your kind thoughts gigitheweegie. That’s very interesting. I don’t wear glasses at present but have been resisting using reading glasses. I notice my eyesight changes when I feel under-medicated and my close sight becomes blurred but clearer when I’m feeling good and properly medicated.
Hi! Be aware that you can only tell if you have a conversion issue when taking Levo. I wanted to go back to NDT when Levo didn't seem to be helping me anymore but realised I had things to work out first. I was low in Folate and vitamin D so worked at that. Took me some time but at least I was improving as I went along. When I got those optimal alongside ferritin and B12 I then made the switch to NDT and have no problems doing that except I missed my sweet spot at first as I followed the STTM info which was to increase by half grains until I reached 2. Trouble was my sweet spot is 1.75 so that threw me a bit at first! So people findctit difficult changing unless everything is right first so to me that makes sense to check everything first. You may actually find that Levo is working better for you then. Also be aware though if taking supplements they are generally for life as they will drop back quickly if you stop but you may find a maintenance dose that suits you. I know take folate on alternate days.
Thank you silverfox7. Very interesting points and sobering too if the supplements are for life. But then if it gives better quality of life (QoL) I’ll gladly do it. I feel I’m facing a future of low energy and poor QoL at present.
Also good to hear that there’s hope that T4 Levo alone might prove sufficient although I see from other comments on the forum that this seems increasingly uncertain if not unlikely. But for now I hope T4 can give me reasonable QoL pending future combo-treatment discoveries.
Hi Adam, regarding your migraines. Please try CBT oil which is very good for migraines and anxiety. You could start at a low dose and increase as needed. It also has loads of other beneficial effects.
Your numbers look okay to me - but you could trial some more if you want as you're far away from hyper territory.
I'd raise your ferritin for starters - get it to 100-150.
Have you checked your glucose tolerance? A1c, fasting bg, after eating bg, fasting insulin, etc. Insulin resistance is more common than hypothyroidism, and isn't really investigated until it's full blown diabetes.
For myself, I try to be thorough. There are about 10 hormones worth testing (5 worth manipulating?), 10 vit/min which can have a large impact, and a few processes related to genes. Just because 1 is off doesn't mean everything will be perfect once you get it in order, sad to say.
Make sure you are getting the rda of all nutrients, and choline.
Sorry to hear all this. I have suffered fatigue over the last 8 months too but quite a bit better now. I found having higher Vit D made a big difference - yours is at low end. My endo also put me on DHEA which is a precursor for many hormones including testosterone- this also made a big difference. Yours looks like it’s at lower end but need an endo to look at this.
The other supplement that helped me with tiredness was ubiquinol (co enzyme Q10) & panthetine.
But as many others have said it’s best to check bloods levels of all important vitamins, minerals & hormones before you supplementing. Healthy varied diet with plenty of protein, good fats & veggies too!
Thanks for your very interesting pointers. I’ve noted them all.
Have changed from 50,000 D3 units monthly to 5,000 units alternate days (orc2,000 daily when I can find the pills) as a commentator on this forum mentioned daily consumption was better.
Didn’t know about the DHEA. Will definitely lol into that. Likewise the Q10 and panthetine. Are these usually for life or until better levels return.
I usually have extensive blood tests done every 4-6 months or whenever the Insurance will cover it - it can add up to £500 each time. I will seek retesting in 1-2 months.
I’m not sure about how long DHEA is advised for but as we age our levels of these hormones decline so it could be long term. Q10 is also something that declines as we age. If you have a good doctor it might be worth checking this too.
Pantethine is something I’ve started reducing now my tiredness has improved. But again best to work with a practitioner if you can as you don’t want to get any toxicity. We are all different and without having extensive blood tests you won’t know your deficiencies.
Hopefully the vitamin D will make a big difference to you. Good luck and I hope your vitality returns.
Are you on Lupron or some other medication to suppress testosterone? If so, that could be part of the problem. When my husband was on it, his energy levels tanked. I'd imagine that could make someone feel depressed, as well.
No, not on anything to suppress testosterone. The opposite in fact. Was on quarterly Nebido injections for hormone replacement therapy for low testosterone.
I asked whether that caused my prostate cancer (PC) but they said no. However they stopped the Nebido instantly they knew I had raised PSA and PC. Am waiting for next PSA test to see if zapping the tumor has worked.
I was wondering if absence of Nebido has led to my bad fatigue but looks like there might be other factors involved (the GA, settling down after the zapping procedure - a wand inserted fires ultrasound waves at the tumor).
What did you have prostate surgery for, exactly? Do you still take thyroid medication? Do you still take medication for your prostate? And, if so, what medication do you take for prostate and how much? Is it an alpha or Beta-blocker?
Okay, considering the HIFU ablated the tumor how do you feel on 125 mcg of T4?
You say you will be taking 125 mcg of T4 for the rest of your days. I would keep an open mind because, obviously, another pill or ultrasound may come along and eliminate all your problems? I'm not a doctor; I just go by how I feel and look for anything that might help me eliminate any negative reactions. Your T4 levels are still (for almost all GPs & most endo's) within range and your FT3 is also but it may very well be that you're having a conversion problem. Your T4 levels can be normal but if you have low T3 levels you're (probably) not converting the T4 to T3, which is Thyroxine's only 'real' job to turn into the active Liothyronine. It's your right to get the right medication for your hypo & Hashimotos, but, unfortunately, the truth is it will probably be up to you to get your proper dose of the right medication. Remember the world is harsh and, comparing it to a car, it's gasoline is money. Liothyronine, T3, costs more for them then T4 because of the availability of T4 and the unavailability of T3. Look at your FT3, always, on every blood test because if it's too low it is a conversion problem. May peace rest upon you, through your journey and your faith return to you that god hasn't forgotten you, as you may well think.
Thanks GKeith for your time in writing your thoughts. Very interesting.
I have just changed dosages but I feel slightly better on 125 mcg and 150 mcg alternate days although have also started supplementing vitamin B complex, phytonels (berries etc), and vitamin D3 (5,000 units daily, was taking 50,000 monthly).
Yes one must remain positive. I shall work on that.
I must investigate the possibility of poor T4-T3 conversion problems. Others have mentioned this too.
I fear the prospect of trying T3 as others have mentioned problems in managing it. I can’t get T3 in Middle East but might in THAILAND next year. Doctors there are fairly good too although I suspect the usual Endo tunnel vision will prevail.
I can’t receive free NHS treatment in UK as I am not resident there so I will pay for treatment in Thailand. I hope that might get me improved attention.
Thank you again for your kind thoughts and concern. Yes I shall look to Him for guidance without being slothful.
It's much easier to take T4 only, of course, but, I would say, only if it is converting properly. As you get older your body, naturally, slows down and things change. I was on T4 only for 26 or so years, straight, not a problem but then, things changed and, so, we must change with them. Peace be upon you.
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