My TSH was around 4.7 when I was first put on 25mcg Levo last year.
I'm trying to work my way up the Levo doses to better health and energy, but it seems very slow. Right from the start, as my dose increased and I retested 6-7 weeks later (longer initially) my TSH went up and Free T's stayed more or less the same. This puzzled both my private and NHS doctors and as a result I have an appointment with an endocrinologist in late October to try to find out why my TSH climbed and Frees remained static.
This last blood test finally showed a drop in TSH and a very tiny rise in both FT4 and FT3. But it's so tiny.
I don't know what to think. It doesn't seem like normal hypo to me. Antibodies (both sets) returned below the range.
In April, taking 50mcg my results were:
TSH 10.30 (0.27 - 4.2)
FT4 16.9 (12.0 - 22.0)
FT3 4.4 (3.1 - 6.8)
In July, on 75mcg my results are:
TSH 7.13 (0.27 - 4.2)
FT4 17.1 (12.0 - 22.0)
FT3 4.5 (3.1 - 6.8)
Any thoughts on why the progress is so slow? I am now raising to 100mcg.
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FancyPants54
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Your progress is so slow because your dose of levothyroxine hasn't been raised by 25mcg every six weeks after a blood test.
Starting dose is 50mcg then 25mcg every six weeks until TSH is 1 or lower. Many doctors think when the TSH is somewhere in range we're on sufficient but that's not the case the aim is a TSH of 1 or lower. FT3 has to be at an optimum because T3 is the driving force for our metabolism. Levothyroxine is an inactive hormone and it has to convert to T3.
75mcg of levo is a low dose, and that's why you don't feel well either you cannot covert T4 into sufficient T3 or you could have something called Thyroid Hormone Resistance - doctor probably doesn't know about Resistance. That would mean you would only recover your health on T3 only but they have stopped prescribing T3 within the last couple of months.
We now have an Appeal in the Lords about the withdrawal of T3 without notice to those that find it is a lifesaver.
April results below:
TSH 10.30 (0.27 - 4.2) - dose is insufficient due to high TSH.
FT4 16.9 (12.0 - 22.0) - should be nearer 20.
FT3 4.4 (3.1 - 6.8) - should be nearer 6.
*****
July results
TSH 7.13 (0.27 - 4.2) - still too high - insufficient dose.
I don't think my results show a conversion issue do they? They have both risen together by the same amount.
I've tried T3 only in the past. That didn't make me well. Perhaps it's that this has just been so slow and drawn out. I am now insisting on 6 week testing and raising, which is how I've managed to get to 100 this week. I will keep plodding on, dragging my doctors behind me.
Ah, of course. I misunderstood that. I know about the range I'm trying to get them into, I thought perhaps you meant there was a percentage between the two Frees that was relevant. Ignore me, maths is not my best subject. Or memory right now!
Doctors assume that giving patients Levothyroxine will add to the T4 the patient's own thyroid produces. So, if you were producing 50mcg T4 per day before treatment began, then giving you 25mcg Levo per day will mean you have a total of 75mcg T4 in your body. (Please note I have absolutely no idea how much thyroxine a thyroid normally produces, I'm just making up numbers - but the principle still applies.)
But sadly, this isn't how the thyroid works. If your thyroid was producing 50mcg T4 per day, and you add 25mcg Levo, your own thyroid will probably reduce its output, and it might reduce it by a lot. So you might end up having less T4 in your body than you started off with. The solution is not to take you off T4 but to increase the dose.
Your increases in dosage are pitifully slow. If you started taking Levo last year and you are only on 75mcg in July this year, then your doctor(s) have been guilty of stringing out your misery, presumably because they know nothing about the thyroid and are terrified of treating it.
You don't say when you started Levo last year. But lets imagine you began at the beginning of December. You could have had testing in mid January and an increase of 25mcg per day in your Levo. Another test and increase at the beginning of March. Same again mid-April, same again early June, and same again mid July. Obviously I've exaggerated for effect. But you shouldn't still be on 75mcg in July - that's much too slow in raising your dose. (Yes, I know you are just going up to 100mcg, but my point still stands.)
Unless you are over 50 and have a heart condition you should have been started on 50mcg Levo, not 25mcg. So, that would have slowed down reaching your ideal dose as well.
From now on, can I suggest that you ask your doctor for a blood test form each time your dose is raised, and say that you will use it 6 weeks after raising your dose. And make the appointment for the blood draw as soon as possible so you aren't kept waiting for an appointment, and make an appointment for a follow-up with a GP one week after the blood is drawn.
Thanks humanbean, I think you have hit the nail on the head. I was just unsure about why the TSH was rising and yet Free T's were not falling in line with the TSH rising.
It's a long, sorry story. I have had thyroid issues for quite a few years but was unable to get my GP to diagnose it. I had to try to do something about it myself. I visited Dr P. and followed his guidance but that didn't really work. I don't think loads of adrenal glandulars did me any favours. I tried Armour for a while under his watch but never felt well, too prone to jittery anxiety. I weaned off for a time and felt better.
Then, with a rising list of symptoms I tried Armour again myself. Some improvements but lots of side effects that I didn't like and again I weaned off. I read about T3 and the book Recovering With T3 and decided to give that a go. That worked at first but then I became over medicated without realising it. My signs didn't react to the stimulation so I kept raising according to the protocol.
Eventually I saw a private doctor for HRT and she freaked out over the level of T3 I was taking. I certainly wasn't feeling well. I had a funny turn getting off the train to see her for the first time. When she freaked out and told me to half my dose immediately and to let her take over and stop doing it myself I was feeling so ill and so desperate that I decided to do just that. I weaned off T3 completely and for a while my thyroid seemed to rally. Then last summer she said it needed help now because my TSH was around 4.7 and so she started me on 25mcg every other day! I started in June, I was 54. I am 55 now. I don't have heart disease but I've been ill a long time and I've become fat so that might be why it was so slow. She also only retested every 8-10 weeks at first. Still I went along with it. So my second raise was 25mcg a day. Then 25/50. Then 50 a day. 50/75 a day. 75 a day and finally now 100mcg a day. I stopped doing it her way and started pushing for 6-7 week testing at Christmas. And that has got me here. But I was puzzled over the rising TSH and level Free T's.
I'll just keep going. I have no issue getting blood tests because I pay for them to get the T3 result. I think her idea was to use Levo. as a supplement. It didn't work. I obviously need it.
Good points were last July for the first time in years I was able to pick the gooseberries from my garden and make jam and cordials. That energy didn't last but it showed me what should happen. Then again at the end of August I suddenly felt so much better that I hired an electric bike and cycled 45 miles over the holiday weekend. First time on a bike in years. I LOVED it. I felt alive again. But it didn't last. I was still on 25mcg ever other day then. But I've not had any nice days like that again since.
I really don't like the sound of a doctor who thinks treating someone with 25mcg Levo every other day is a good idea. Nor does it sound sensible to have raised your dose by 12.5mcg Levo every 6 - 8 weeks.
Rather than paying for a private doctor why don't you pay for this test every 6 weeks?
I am buying my tests and I've taken charge of the timings now. I'm only really using the doctor for the prescriptions because she gives me lots of tablets so I won't be left struggling if GP doesn't want to give them at the required dose. GP is happy for 75mcg, seeing her again on Tuesday to tell her I've increased to 100 and get this last set of test results put onto my record. Provided she's OK I then have 2 routes to tablets.
In the doctor's defence, I did react badly to dose increases, which is why it was done so slowly. This increase to 100 is the first time I've not had the reaction so perhaps I'm getting somewhere. I used to feel really over medicated with high anxiety, heat/sweating, jittery, spaced out and generally feeling awful even on 12.5 increases, just not as bad as on 25 increases.
I do all my own nutrient testing and have done for years. My only issue is Ferritin, which is a bit on the low side at 35. I'm working hard on that one at the moment with food, tablets and mouth spray so hopefully I will be able to get that level more optimal. I understand all the other nutrient requirements and where the results should be and I'm doing well with minimal supplementing on those. Ferritin has been an issue before in my 30's, so I guess I will have to really keep my eye on that one.
I used to feel really over medicated with high anxiety, heat/sweating, jittery, spaced out and generally feeling awful even on 12.5 increases, just not as bad as on 25 increases.
That sounds like a problem caused by having too little or too much cortisol. Have you ever thought of doing a saliva cortisol test? The two best ones are :
Both the above companies automatically include a DHEA test with the saliva cortisol test which is well worth having done. Medichecks and Blue Horizon don't include a DHEA test.
For information on doing business with Genova and Regenerus see the following link :
I have done them in the past and had varying results. 2 years ago I was referred to a private endo (who I didn't like or think worth it) but the one thing he did do was ask my GP to conduct a 9am cortisol blood test with a tablet I had to take the night before. The result was very low, way out of range and should have been picked up by either my GP, the endo. or my hormone doctor but all 3 ignored the result and I guess I was feeling so bad and so confused that I didn't seem to notice it either. I found that test result again a few months ago and realised that there was an issue with the result. That has now been repeated and come back well within the reference range.
As I said in my post, I have an NHS endo. appointment for the end of October and one of the reasons for being referred is the cortisol test results I've had and my thyroid too. I am most keen for the outcome of that appointment to be adrenal focussed. I gained a lot of weight very quickly when it happened and I have extremely low energy levels and no physical stamina. All my hormones are low. DHEA, testosterone, oestrogen, etc. I want them to rule out adrenal issues and will be asking for further testing given the 2 very different results I have. My GP is supportive in this because she's worried about that very low test result from 2 years ago.
That said, I do feel a lot less adrenal than I did 2 years ago. I don't wake up with pounding heart and fear or nightmares every night at 3am as I did back then. I sleep through now and I feel OK when I wake and get up.
Hi, yes, I take 1000 capsule with the iron I take in the evening. I use a mouth spray in the afternoon, so I don't tend to take C with that as I'm at work.
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