Thyroid UK
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TSH over 100 and on steroid inh


I have been struggling with my breathing since August last year. Doctors thought it was my cold or asthma but it coincides with a drop in Levo in January last year. I was dropped from 150 levo which I had been on for a long time but lost 2 stone in weight through illness and then was overmedicated so was dropped to 100 Levo. Over the following months my breathing got gradually worse and to be honest I thought it was my Copd to start with. From January this year I ended up being on a nebuliser and in hospital 5 times until April. Since April I have been on a steroid inhaler but have had to drop my Levo down as felt really over medicated. I only feel well on 50 Levo but know it's not enough hence my high tsh.

my latest blood test results are

tsh over 100 (0.27-4.20)

serum free t4 8.8 (9.0-26.00)

serum creatinine 91 ((50-90)

I did also have my folate, ferritin and b12 tested but the receptionist doesn't seem to have printed them off but I was told by Dr that I also have anaemia, which he didn't give me anything for it. He just told me I have to get my Levo back up to what it was before. He didn't listen when I said I can't because of symptoms.

have had a scan on thyroid middle of July and the Dr that did the scan said I have hardly any thyroid left. When I saw gp about 10 days later the scan report hadn't come through.

sorry for long post but don't know what to do. Feel desperate to get my life back.

hoping someone can help with where I go from here.

many thanks


forgot to say I have been underactive thyroid for over 25 years

9 Replies

Please get a copy of your blood test results. If you are in UK it's your right.

If you are anaemic you need treatment right away, don't put it off. Visit a different doc if needs be or if you feel very ill go to A&E. Your thyroid meds won't work well until all your vitamin levels are in range. If you don't take enough thyroid meds you won't absorb vitamins from your food well either. They all work together. What is your doctor doing to help you? Maybe you need to find a new one?



Ask your GP receptionist for a copy of your folate, ferritin and B12 results and ranges and post them in a new question for advice.

If you have iron anaemia your GP should have prescribed iron. Iron anaemia can cause breathlessness and make it difficult to tolerate sufficient Levothyroxine dose without feeling hyper. Being profoundly hypothyroid with TSH 100 will also cause breathlessness.

You will need to supplement iron to raise low ferritin/iron and increase your Levothyroxine dose to 75mcg for a couple of weeks and then 100mcg. Iron and Levothyroxine should be taken 4 hours away from each other.


Thankyou both for replying. I did get a print out from receptionist but don't seem to have all the results on it.

I'm thinking that my steroid inhaler is stopping me absorbing.

each time I try to up my Levo to 75 my breathing gets worse and the constipation and I get dizzy spells. Feel like I'm going backwards. I never thought of anaemia causing breathlessness.

I have seen every Dr in my surgery and they all say that steroids don't affect your thyroid meds, even the Drs at the hospital.



Have you tried other brands of Levothyroxine?


Yes I have clutter the only one I don't seem to get on with is the Teva brand



I suggest you find out about your iron/ferritin levels and start supplementing iron with vitamin C to correct low levels and your breathing will probably improve.


Thankyou will definitely look into that.


Does your steroid inhaler raise your cortisol levels? If it says on the patient information leaflet that you are at increased risk of developing Cushing's Syndrome while on the inhaler then it almost certainly does raise your cortisol. Steroids usually do.

High cortisol is a common problem on this forum, and there are lots of different reasons for it. It has the effect of lowering TSH, reducing T4 to T3 conversion, and makes it very difficult or even impossible to tolerate raising dose of prescribed thyroid hormones.

I've lowered my own cortisol with Holy Basil having tried various other things over the years. I was able to double my dose of thyroid meds after a few weeks/months on the Holy Basil.

Since you need the steroid inhaler in order to breathe I'm not sure what choices you have. The only suggestions I can come up with are to skirt around the problem for a while i.e.

1) Optimise nutrients

2) Work on improving your gut health.

When/if that helps then perhaps you could then try adding in various things to reduce cortisol. Your doctor is unlikely to help you, so I would think you would need to try over-the-counter supplements. There are quite a few choices available, but it really is trial and error what works for each person.


Hi human bean

yes I think it must be affecting my cortisol as can't raise my levo from 50 without having breathing problems. When I have been on prednisone before it usually affects my kidneys so usually stop taking it after 6 days, so I imagine a steroid inhaler would have the same affect. Although most Drs say it's only going in to my lungs.

will try what you suggest and see what happens.

I did ask the last Dr I saw to be referred to an Endo but he said he can only do that if I have another high tsh result!!!


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