Overwhelmed...TT in June 2013, am taking 125/100 Levo on alternate days.

[Nicnak]

Have been told by the registrar that I'm within range (last blood test was the start of December, next one is in 2 weeks time. I go through phases of feeling great and back to myself and then crash I start to feel overwhelmed again and then the tears start and I feel as though I can't cope. My last hospital letter suggests that this is probably attributed to another factor, but I feel really hormonal. Does this happen to anyone else? Thanks in advance for your replies

[marram]

You have not said why you had to have the TT, it does make a difference, was it for Graves' or something else?

[Nicnak in reply to marram]

It was for presumed papillary cancer which turned out to be an hyalanising trabecular adenoma (no easier to say than type!) apparently an incredibly rare type of tumour.

[marram in reply to Nicnak]

In that case, I presume that your TSH needs to be suppressed, to prevent recurrence, so if you ask what your actual TSH is the next time you see your doctor or surgeon, it should really be 0.01 or undetectable. I suspect that at the moment that is ulikely on 100/125 unless you are quite small and slim.

It is quite early days yet because it sometimes takes a year to find your optimal dose of Thyroxine and in some cases it just is not the right treatment, because while it is true that some people are just fine on levothyroxine, others just do not get on with it and feel very hypothyroid despite all the doctors say. In cases like that some form of T3 can be the answer, Cytomel, for instance, which is the form of Thyroid Hormone which the body can more readily utilise.

You have been through a real rollercoaster and having the thyroid removed is a big shock to the system, I also have had a TT so I really feel for you.

Keep talking and looking on here, try to get the blood test results and keep a record of how you feel - it can help to pinpoint the reason for any problems. For example, do you feel better or worse the day you take 100 or 125?

I personally have to have a really steady unvarying dose to feel well, even on Levothyroxine an alternating dose sent me haywire, I was better on 112.5 every day rather than 100/125. So I would split my 25mcg tab in half - not easy. Some people are fine on an alternating dose!

You can see from this that we are all very individual in how we react to the medication, but at least on here you are more likely to find someone who has had a similar experience.

Welcome to the party, pal! (With apologies to Bruce Willis).

Marie XX

[Nicnak in reply to marram]

Hi Marie

Thank you so much for your reply. It really does help with that "in it on my own feeling"!

To be honest I don't really notice a difference between 100 and 125 days; it seems to be a more general feeling. I was told at my last appointment that as my tumour wasn't one of the four cancers then they weren't going to suppress my TSH...I have to confess to not being a big fan of my registrar...upon telling her that I feel like I have permanent PMT her reply was "oh, I don't suffer from it" - not the most supportive comment and I really feel as though I'm a bit of a thorn in her side.

My last results were

TSH - 0.93 (0.4 - 5)

FT4 - 18.9 (10 - 23)

FT3 - 3.9 (3.5 -6.5)

Kidney and liver results normal

Haemoglobin - 132 (120-160)

My vitamin D and B12 were also low and I am taking supplements to increase them.

I take my levo first thing in the morning with a glass of water and don't eat or drink anything else for an hour and take my vitamins in the evening.

Great idea to keep a diary, will start that, in fact not really sure why I didn't to start with.

Nx

[marram in reply to Nicnak]

Lookig at your FT3, it really is quite low, it is almost at the bottom of the range, which could actually be a clue as to why you are not feeling great. The ratio of FT4 to FT3 is roughly 6:1 which suggests that you are not converting properly, since a good conversion rate is about 4:1.

That could be because your vitamin D and B12 still need a bit of boosting, also lowish iron can hinder the all-important conversion from T4 to T3.

The haemoglobin level is nearer the lower end and could be better. Some people use a sachet of Spatone which is rich in iron, in Orange juice with lunch - that way it's not too near the Levo, which is important being iron - and it is well tolerated and absorbed. I've been taking Spatone for a few months now and it has helped. It's not to expensive either - I get mine from Amazon. I just bought 84 sachets for just over £16 - 19p a day isn't bad.

[lucylocks in reply to marram]

Hi marram,

Sorry to jump in on the conversation, you just advised Nicnak to take spatone as her haemoglobin is 132.

Mine is 139 range 120 -160.

Do you think I need to take some as I am wondering if this is the reason and still really tired.

Many thanks browny

[marram in reply to lucylocks]

I stop short of advising - I have no medical training - you will notice I said that 'some people use Spatone' and I do too. you don't need a prescription for it, and certainly it would not harm you.

Better iron levels can improve tiredness and Spatone is an economical way to get some extra iron as it is easily absorbed especially with the vitamin C in the orange.

Hope this helps

Marie XX

[lucylocks in reply to marram]

Hi Marie

Thank you for your reply, I asked about the 'Spatone' only because Nicnak's level is 132 and mine is 139 so just wondered if I needed some iron as my level is not that much higher then hers.

[marram in reply to lucylocks]

In your situation, I would be giving it a go, I think. It's very gentle on the stomach.

XX

[shaws Administrator]

Welcome to our site. It is not unusual to feel as you do but let us know what Marram asks. In the meantime, it is not unusual to feel as you do and you have already come across a doctor who has assessed how you feel because that you are 'within range' (i.e. that means that we should feel fine when we are anything but). Do not worry, it is a sharp learning curve.

First, always get copies of your blood test results for your own records, with the ranges, and also to post them if you need members to comment.

When you have your next blood test, do not take your medication until afterwards and try to get it as early as possible. Also ask your GP to check Vitamin B12, Vit D, iron, ferritin and folate.

Nowadays, many doctors don't know the clinical symptoms of hypothyroidism and pronounce a diagnosis only on the blood test, whilst ignoring clinical symptoms.

Regards

[ThyroidHell]

I also had TT in June 2013, I started on 100mcg per day and now trialling 50mcg, this of course been dropped because the 'blood tests say so' basis. I must say I don't feel any different wether I am on 100 mcg or 50 mcg. I don't feel bad to be honest, I work every day and plod on normally. Only thing I have got now is the 'heat haze' in my eyes ..clouds passes frequently and I keep squirting fake tears/gel which helps a bit. I don't know if this is a side effect of the thyroid removals or not. I had all the ferritin, folate, iron b12 back normal. I didn't have vitD tested though which I am going to ask in April.

All the best

Marja

[shaws Administrator in reply to ThyroidHell]

Hi Marja, just to say that 50mcg is a very small dose and, just for your information, cursor down to the question dated June 8, 2001. Always get a copy of your thyroid gland blood tests for your own records, with the ranges, and you can post if necessary for comments.

web.archive.org/web/2010103...

[ThyroidHell in reply to shaws]

Thanks shaws this would explain my visual disturpance and sudden cholestrol raise from 5 to 6.1 without changing diet in anyway ..god damn !!! So in your opinion T3 is the key??? I just printed this article and going to give it to my Gp ..and going to stop that pathetic 50mcg .

[shaws Administrator in reply to ThyroidHell]

I really don't know why someone without a thyroid gland doesn't get prescribed natural dessicated thyroid which contains all that is missing, T4, T3, T2, T1 and calcitonin but the BTA etc make false statements all the time about it. It has been used for more than 100 years and people were diagnosed according to their symptoms. Sometimes it is trial and error to find an alternative which suits but we don't often get the chance unless we go private. There have been far fewer recalls (if any) whereas levo has had many recalls.

If your GP lets you trial some T3, it may make you feel much better. If a GP insists on keeping us 'within range' we may not have medication to make us well.

[ThyroidHell in reply to shaws]

I will discuss about this with my GP and I will make an appointment this week. I will let you know how it went. Thank you very much for your fantastic help xxx

[Orangelady1]

Hi I had a TT over 2 years ago, and I still have these major dips of unhappiness Crying at a drop of a hat I sympathise with you. The GP says are you depressed, but I know it's down to the thyroid removal. Get well soon

[Mumtoboy]

I had TT almost a year ago. Generally I feel well on 112.5mcg levothyroxine per day. I notice no difference in whether I alternate 100 with 125 or cut the tablets and take 112.5 per day. However, I do get energy drops in the afternoon. Have recently requested a blood test to see if anything is going on with the dose. However all my other blood tests have showed suppressed tsh and high t4. They don't test my t3.

I know people who still have their thyroids and take more levothyroxine than I do, but for some of us, we just don't need high doses.

I am going to discuss with my gp about whether I need and can try t3.

Don't give up on searching for an answer and good luck.

[ThyroidHell in reply to Mumtoboy]

Hi Mum , I am going to see my GP on friday and going to ask T3 too , I am wondering if he won't give it to me, what is the reason? I am going to say that since June my cholestrol has gone higher than its ever been and I get blurred vision ..I should bloody think this is a good enough reason.

Won't give up and same to you too :o)