Feeling lousy ----again/as I do most of the time. I saw my rheumatologist again today who has given me a steroid injection to see if it helps. She says my blood test results don't signify my numerous aches and pains fatigue and general feeling of unwell are anything to do with my thyroid. My Levo was increased by her to 125 last August and I briefly felt better but then developed pains in my right side which are still there. I've had 2 ultrasound scans, seen a urologist and had a sigmoidoscopy of part of my intestines. All clear.
I went gluten free back in September and eat lots of fresh fruit and veg.
Here are the results of the blue horizons blood test that I have just had done. Don't know what to do next.
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AliF
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Hmm that's a hard one, you certainly don't seem undermedicated thyroid wise and no indication of inflammation in the crp. Your other levels all seem okay but I'm no expert on these so someone else might be better to advise on these. It's hard to know what to suggest. I'm assuming you are not showing any signs of being over medicated.
I know many of my aches and pains took well over six months to dissipate after going GF, some even over a year, just to check, are you definately 100% GF, as in got rid of your old toaster, no sharing butter with gluten people, every little cc lol.
Have you had a quick check of your sugar levels - might be worth getting a cheap five day kit from pharmacy.
Maybe you could try a six week elimination diet to rule out any other possible intolerances such as dairy. Is there anything in particular different with your diet?
I had a lot of deficiencies and I found it very useful using an online site called cron-o-meter which unlike other similar types tracks all your minerals and nutrients, even the tiny ones. I was quite surprised in what my diet was low in.
Really scratching here to be honest lol - I know my sides hurt if I don't drink enough water or when my blood sugars are high????
I suppose you could check things like calcium and sodium and a few other things but others here can provide a much better list of specific things to test than me. Might also be useful if you have a full blood count to post?
Your ferritin level is a tad low and you'd probably benefit from taking additional iron for a short while. Your B12 level is also on the low side. Most recommend aiming for 500 and preferably 1000. You could try supplementing B12 (methyl cobalamin).
Might be worth a try. Last time I tried taking lots of additional supplements I ended up feeling much worse and stopped after a couple of weeks. Then felt a bit better! Iron can be toxic in too high a dose.
Ferritin isn't too bad then. You could nudgeb it up a bit and keep it there by eating liver regularly. I got mine up by eating liver once a week, but now it's at 85 I'm eating it about once every 10 days.
Vit D is good, recommended is 100-150nmol/L. Once I'd got mine up to a good level I reduced my dose and now take a D3/K2 combo supplement which contains 2000iu on 4 days a week.
B12 needs to be at the very top of it's range, even 900-1000. It would be an idea to take Solgar or Jarrows sublingual methylcobalamin lozenges 5000mcg for maybe 3 months then reduce to 1000mcg daily as a maintenance dose.
When taking B12 we also need a B Complex to balance the B vits. Thorne Basic B is a good one. Look for one that contains methylfolate rather than folic acid.
You seem to be converting well enough. Good conversion takes place when FT4: FT3 ratio is 4:1 or less. Yours is 3.9 : 1. This will improve if you supplement with selenium L-selenomethionine 200mcg daily. Selenium aids conversion of T4 to T3 as well as helping to reduce antibodies.
When I first started adding supplements, I made a spreadsheet with morning, lunchtime and evening supplements and ticked them off as I took them. Once I got used to them I didn't have any trouble remembering, but I do leave them out on the kitchen worktop.
Just looked at the bottle. They are from Holland and Barret and just say ingredients selenium 200ug. I am guessing they may not be the precise sort you recommend !
I don't rate anything from H&B, Boots or supermarket own brand. They're cheap for a reason, they tend to use cheap ingredients, frequently the wrong sort, and are full of fillers. You get what you pay for with supplements.
I've only used two brands of selenium. The first was Now Foods and they smelt awful. Other members have mentioned other brands smelling unpleasant too.
The brand I use now is Cytoplan, it is a small tablet rather than a capsule (I have problems with capsules so prefer tablets, liquid or powder for supplements) and has no smell. It was recommended by my practioner, it's a very good brand and all their supplements have good bioavailability.
I had more aches/pains/palpitations and felt dreadful when on levothyroxine but felt a benefit when T3 was added - 10mcg (mind you they reduced levo) and then they wanted me to stop T3 when they saw my results. I refused so they wanted me to reduce T4. I had enough then and by that time I'd found TUK (no forum then). I'm well now.
Some people cannot recover on levothyroxine, maybe because it is synthetic and doesn't suit our body. I, too was so stiff could barely move plus joint and muscle pain, couldn't comb hair.
If I were you and I'd source some T3 and add it to a reduced T4 and that might work for you as it does for many. New research has shown that many need a T4/T3 combination but most Endocrinologists never think of looking at research and widening their knowledge and just go by the guidelines.
If you wished to try some T3 you'd have to put up a new post and ask for a private message to be sent.
Thanks Shaws. I will have to wait a couple of months while I wait and see if the steroid injection does anything. I am scared of trying anything without being supervised by a medical professional. And I would have to go privately as all of my Dr's are convinced my feeling unwell is not connected to my thyroid. I am getting desperate though as I am becoming more and more incapacitated. I used to enjoy walking but not sure I would be able to now. I need to do something !
On paper your blood tests do look fine. The most important thing is that you do not feel fine.
So I am assuming that levothyroxine isn't doing its job in helping you feel much better which I can confirm personally that it happened to me also.
Make an appointment with your doctor. Explain that even though your blood tests look good you still feel very unwell and that you have contacted a support group, Thyroiduk.org.uk who are the NHS Choices for information and help with problems.
One of the Scientists who is an Adviser to Thyroiduk and his team have won an award for their research that proves some people need T3 added to T4 in order to restore them to reasonable health.
and another scientific paper by other scientists have came to a similar conclusion that the TSH has to be suppressed in some patients for them to feel wel
which confirms that some patients who are taking levothyroxine need the addition of T3 to their T4 and run off a copy of the above. You can tell the doctor that Thyroiduk.org.uk have copies of the the research papers if he would like to confirm that T3 might be helpful for you to feel well.
Thanks Shaws that is really helpful. Last time I posted my results Clutter suggested an increase in Thyroxine and eventually I managed to get another 25mg and for a while I felt a bit better. But now I have a little more energy but an awful lot of aches and pains and constant dizziness. Grey goose suggests that maybe I'm not converting well as T4 is high but T3 is mid range. If that is the case, some T3 should do the trick.
Yes it can help. I take T3 only as levo didn't agree with me but it is trial and error and we are not allowed to do so because of the guidelines but if we cannot recover our health what next. We are treated like imbeciles instead of adults with a brain. How many people take illegal drugs? - millions I should imagine. All we are asking for is not drugs but life-giving hormones that return us to good health and enables our metabolism to work normally..
Has Jeremy Hunt taken T3 off the list of things that can be prescribed ? I signed a petition about it recently. They are still looking for signatures. Fewer than 450 people have signed !
Some people who take T3 may not be on forums so may not know that there is restrictions now on T3 being prescribed, so still will be unaware until their T3 is reduced/switched. I signed the petition too.
I'm not sensitive to smells and have had some short periods when I have been relatively ok. Never great, but ok. I am scared too of alternatives not working and feeling worse. Plus I would be very nervous of trying anything without medical supervision.
Well, you have Hashi's, for a start, and the antibodies could be causing symptoms. Your FT3 is only just over mid-range, but your FT4 is right up the top of the range. So, you aren't converting very well, and your FT3 is too low for you to be well.
At 382, your B12 is too low, and that could be causing a lot of symptoms, it should be at least over 500. And your ferritin is too low. For a hypo, it should be at least mid-range, which is 85.
So, your rheumatologist is talking out of the back of her hat.
That does make sense although the rheumatologist is a nice lady and is doing her best to help using the type of medicine she knows. So I should take some iron tablets and some b vits and think about adding some T3 ?
Just because someone is a nice person, doesn't automatically mean they're knowledgeable. Neither does a desire to help. I've had some very nice doctors who were so ignorant, it would make you weep. She's totally out of her depth, and talking about things she knows nothing about. A rheumatologist doesn't know about thyroid. Therefore, she should not be making statements like that.
I was referred to her by my GP who said something else is going on with me other than thyroid problems. To be fair to the rheumatologist, last time I saw her within 2 minutes of sitting down she increased my Thyroxine despite what my blood tests were showing so she's not all bad. But I take your point.
Well, she hasn't yet increased it enough yet, has she. Look, I'm not really interested in your rheumy, I'm just trying to help you by pointing out what she missed. You don't have to defend her, it isn't relevant.
I know I get what you are saying. Just difficult when medical professionals are saying it isn't your thyroid, it's something else that is wrong, and people on here saying take lots of supplements and switch to a different form of thyroid drug without medical supervision. That creates a conflict in my head. I'm afraid I am a bear of very little brain !
No, people on here aren't saying take lots of supplements, they're suggesting your ferritin needs to be higher, and your B12 is much too low. And that's true. You really, really need to raise your B12. We would never tell anyone to take a load of supplements they don't need.
Switching to a different thyroid hormone replacement (not drug, these are hormones, not drugs) is a possibility, of course. But, I think just adding a little T3 to your levo would help a lot. Susie's opinion may be that your conversion is 'good enough', my opinion is that 'good enough' isn't good enough. And you would benefit from adding in some T3. Your conversion could be better. It might improve with the selenium, but then again, it might not. Depends why your conversion isn't top notch. It could just be because of the antibodies.
You have to realise that doctors know nothing about hormones/thyroid, and even less about nutrition. So, it's not surprising they don't realise there's a problem. Doctors are continually looking for 'something else' because, in their heart of hearts, they don't want it to be thyroid. They don't believe that thyroid is a serious problem. It's just the way they've been educated.
As for self-treating, well, all in all, that's no big deal. An awful lot of us do it. You'd have to learn a lot more about thyroid before contemplating it, of course, but just adding in a little bit of T3 is perfectly doable. And this forum is always here to help and support you, if you have doubts.
You do have Hashi's, so there are three things that can be done to help you :
a) you can go on a 100% gluten-free diet to lower antibodies. That makes a lot of people feel much, much better, and really worth a try. But no doctor would know about that.
b) you can take selenium every day, which will probably lower antibodies and could help conversion. Doctors don't know about that, either.
c) get your TSH down to zero - adding in T3 should do that. The less gland activity there is, the less antibody activity, which has got to be an improvement. And the extra T3 should make you feel better, anyway. But, that's another thing that doctors know nothing about, so you might have a struggle on your hand to get them to accept your suppressed TSH, because a suppressed TSH terrifies them. Which is another reason so many of us self-treat.
However, it's all in the conditional, because there's no guarantee of anything, where thyroid is concerned. It's all trial and error, looking for what makes us feel well - because we're all different, and what suits one, might not suit another. You just have to try things. You know, nothing ventured, nothing gained!
Thanks Greygoose. All makes perfect sense. I'll start again with the first 2 . I don't eat gluten now ( as far as I am aware) but I will double check everything before I eat it. I take seleniumbut not everydaybecause I forget, so I will make sure I take it daily and the next step add T3. Then I will be back for more advice. Thank you so much for being so clear.
Yes, I agree. If I had listened to the doctors, I would be jobless and unable to get out of bed and wouldn't have managed full custody of my daughter by now. Because of what I've proved to them, they have now had no choice but to agree with what I diagnosed myself with lol! They will never help you, they're only useful in terms of getting prescriptions and blood tests you want to be honest. The most they will do is tell you that you must be depressed and offer you anti-depressants once they have run out of blood tests to test you with lol! The best thing for you to do is read as much as you can about absolutely everything so you can work out what to do next yourself and talk to the doctors from an informed position. this medical stuff is really not all that complicated once you get the terminology and this is the only way you will be able to help yourself
If diet changes help, but don't completely help, pls try to rule out Lyme - most chronic aches and pains - and MOST diseases have it as the root cause - but hard to diagnose, and tough to treat, but healing is possible.
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Test results help please?
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