Thyroid UK

Please help - what do I do next?!

Hi everyone,

I am starting to feel desperate as I can't work out where to go next. I am unsure whether I am under medicated, over medicated or just inappropriately medicated! I have been on Levothyroxine for 2 and a half years and initially I felt better on it, the only symptom that remained was brain fog, but it did improve a bit. I was on 75mcgs until recently when I started to get some of my old symptoms return. These include slight weight gain, bad brain fog, low mood and numb fingers. My levels at the time were:

TSH 1.75

(0.35-3.5)

FT4 13

(8-21)

FT3 4.1 (3.8-6)

I persuaded my GP to up me to 100mcgs and 6 weeks later my levels were:

TSH 0.27 (0.35-3.5)

FT4 13 (8-21)

Unfortunately the lab refused to do the T3. I still have the numb fingers but I have lost some weight. However, the brain fog has got a little worse.

I feel like I can't function properly, for a decade I have had low motivation, clouded thinking, I struggle to remember names and faces and I find I snap easily and have a bad temper. I have two small children and I feel I can't be a good mum to them as I have no motivation to go out and do things with them and snap at them which I hate. I struggle in my job, I was an intelligent girl but now I feel like an idiot, I can't concentrate on anything, I can't process information, it's like my brain just doesn't work anymore.

Where do I go next?!

Do I increase my dose even though TSH is low and my brain fog has worsened?

Do I decrease my dose as maybe the irritability is due to being over medicated? I worry if I did this the numb fingers would get worse as this symptom went when I first started levo.

Do I consider trying other treatment options like adding in some T3 or changing to NDT?

Please help me and offer me some advice or success stories that you may have had. I feel like there is no light at the end of the tunnel at the moment. I have tried everything I can to make sure I am in my best health, I supplement and have everything in good range, except iron which I struggle with even with supplementing. I am gluten and dairy free, eating mostly a whole foods diet and I take selenium.

Do I go a step further and try the autoimmune diet? Should I look into adrenals or something else? Any other tests you think I might need?

I really appreciate everyone who takes the time to read this. Please comment, even if you think it won't help much, I just need some ideas! Thank you so much.

17 Replies
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Hi Foxrabbit.

Sorry to hear you're suffering. Im sorry can't advise you on doses treatment etc, but there are some fabulous people on here who will help.

You're not your own, many have gone through the same and come out the tunnel the other end.

People on here don't know you but already care about you and will help.

Don't be so hard on yourself, you're doing the best you possibly can.

Take care and give yourself a big hug.

Nick.

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You're under-medicated, pure and simple. Your FT4 isn't even mid-range. You seem to be converting well, you just don't have enough to convert.

Once you are on thyroid hormone replacement, the TSH is irrelevant. You should not dose by it. The FT3 is the most important number, but failing that, look at the FT4. Yours is quite a bit below mid-range, and most people need it up the top of the range to feel well. So, you need an increase in dose. :)

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Thank you Greygoose, I do love your no nonsense, straight to the point replies (even if others don't!), they are so helpful to me! Much appreciated.

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You're welcome. :)

I am what I am, take me or leave me. No-one can aspire to being liked by everyone and still stay true to themselves.

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LOVE JUST THE WAY YOU ARE !!!!!! YOUR A KEEPER !!!!!!

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Thank you, J. :)

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Foxrabbit - you are not overmedicated. Last week when you posted I quoted what Dr Toft said in the Pulse article and suggested you send for it, so that tells you your aren't overmedicated. You need an increase, your remaining symptoms will probably improve when you are optimally medicated.

Your ferritin level was mentioned and eating liver and other iron rich foods recommended. Ferritin must be at least 70 for thyroid hormone to work. So you have to work on your ferritin and get it up by whatever means you can.

You say you supplement and everything else is good in range, post the results and let's see if they are all optimal.

Get all the building blocks in place and get optimally medicated and see how you are then.

Your first set of results show that you are actually converting well enough so no need to consider anything other than Levo at this stage. Good conversion takes place when FT4: FT3 ratio is 4:1 or less, yours is 13 : 4.1 = 3.17 : 1

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Hi SeasideSusie,

Yes, I got a copy of the article and it's in my handbag ready for my next appointment at the doctors next week! OK, so both you and Greygoose think I should up my medication and you have both offered wonderful advice to me so far so I trust you on this too! I have a feeling my doctor will be reluctant due to the TSH but I'm good at pushing my opinions! I just need to be sure in my thoughts on it but the fact that both of you think it's the way forward makes me feel confident in it. If my doctor won't up me then due to a previous dose change shortly after collecting my last prescription I do have 8 weeks supply of 25mcgs and another 8 weeks worth of 50mcgs that I could cut up so I can trial it myself if necessary.

I had posted my levels of vitamins before so they have been commented on and I know what I need to work on. I've printed off some liver recipes thanks to you but I just have to find a local supermarket which sells it! It obviously isn't very popular where I live and unfortunately there are no local butchers close by either.

Thanks again

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What are your VitD, B12 and B9 (folate) results?

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Hi Mary-intussuception, I supplement all of those, VitD was 74 which fell in the adequate range of 50-120, but I've ordered a slightly higher strength VitD supplement with K2 in it to raise it a little higher. B12 was way over the lab range so I've dropped back on that and folate was middle of the range so I'm now taking a good quality b-complex to maintain those levels and keep them in balance.

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So your B12 was way over the lab range. Surely you have read that if you have been supplementing - testing B12 is of little value as results will be skewed. B12 that is tested is both the bound and unbound that is in the blood - well B12 is needed in the cells where it becomes utilised. I would not stop taking B12 .... it is so important. Click onto my name above - click POSTS and the 4th one down will give you a video about B12 and Brain shrinkage :-) Alzheimers anyone ??

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I had been taking 5000mcgs of sublingual methyl-B12 which I started daily when initially diagnosed as I thought it was probably the cause of the numbness in my fingers, I dropped it down to once a week or maybe less for a period when I felt ok and then recently when the numbness came back I took it daily again (although after two weeks there was no improvement on the numbness) so I know the most recent test would not reflect my true levels. The B-complex I now take has 100mcgs methyl-B12 in it and I take it daily. Do you think that is sufficient to maintain levels or should I maybe take the sublingual one every so often in addition? I know you can't overdose on it so it won't harm me anyway so I might do.

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As I live with the consequences of B12 deficiency due to radical surgery that took away the Terminal Ileum over 43 years ago - I am an advocate of good B12 levels. So no advice from the medical profession - I had to learn the hard way. My lower legs went numb and I could not walk up small inclines or steps without pain. MRI's revealed stenosis - but now that I am well versed that LOW B12 is a neurological condition - I feel that the costly surgery I underwent in Germany was not a good idea. All along I think it was caused by the B12 deficiency - at a level of around 300 + that I was constantly told was * fine * .... NOT.

Did you look at the post I mentioned above - I think not as I think you may well have had a comment :-)

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I haven't looked at the video yet, I'm at work and although I can just about get away with sending messages, I think watching a video is a step too far so I'll save it for tonight!

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Don't we need to be careful with Vit D supplementation? You probably know more about these things than I do!

As far as I am aware it is fat soluble so stored, so we need to be careful not to take to high a dose supplement?

X🐥

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You are probably right Mary-intussuception, I have to admit that VitD is the one that I have done least research myself on. I have been taking a tablet with 1000IU most days, but usually less in the summer, so it is not a high dose by far. I was thinking of changing to a liquid version which has 1000IU VitD and 45mcg K2 in 3 drops, which I could then tweek the dose by using an extra drop each day for a while. I certainly don't want to end up taking too much, I just want to up it a little.

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Firstly you get your GP to test correctly

Ferritin

Folate

B12

Vit d3

Without those we have no clue whats going on

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