Feeling desperate- please advise

[Weedaisy]

Hi everyone. My name is Daisy. I have been feeling really rotten for nearly a year now- hair loss, profound tiredness and depression/ anxiety.

My first blood test revealed very low tsh levels but low/ normal t4. That was a year ago and I had them don't again and the same thing this year.

So the doc started me on thyroxine 75mg basically to see what would happen. I've been on antidepressants for years, having an inherited depression and anxiety problem since my 20s ( I'm 53 now)

He thought they might help them to work better and thinks that I have secondary hypothyroidism but doesn't know what is causing it. (MRI scan scheduled for next month)

So I wanted to know why I feel worse this week after 4 weeks on the levoithyroxine

I have even more hair loss- what seems like handfuls - my mood is truly terrible.

Does anyone have similar issues? Can anyone help before I go out of my mind? I'm really struggling ...

Thank you!

Daisy

[SeasideSusie Remembering]

Weedaisy Hello and welcome

Low TSH and low/normal FT4 can indicate secondary Hypothyroidism. I'm surprised that your doctor knows about secondary Hypothyroidism but not what can cause it - it can be a pituitary problem or the hypothalamus. Hopefully your MRI scan will help throw some light on it.

Depression is one of the symptoms of hypothyroidism.

Do you take your Levo well away from your antidepressant?

Hair loss can be caused by low levels of quite a few nutrients including ferritin, zinc, etc healdove.com/disease-illnes...

It would be a good idea to ask your GP to test as many vitamins and minerals as he is willing to do, but as an absolute minimum ask for

Vit D

B12

Folate

Ferritin

Also, a full thyroid panel would be a good idea to include

TSH

FT4

FT3

Thyroid Peroxidase antibodies (TPO)

Thyroglobulin antibodies (TG)

FT3 and TG antibodies are rarely done by the NHS.

Having FT3 tested at the same time as FT4 will tell you whether you are converting T4 to T3 well enough.

Testing antibodies will tell you if you have autoimmune thyroid disease. You can be negative for one type of antibody but positive for the other, which is why it's sensible to test both.

Post results when you have them (including reference ranges) for members to comment.

[Weedaisy in reply to SeasideSusie]

Thank you, that's really helpful. I have had lots of vitamins checked and indeed have low ferritin so I'm taking iron tablets. Probably not taking enough because they make me so sick that I can't take the full dose.

I will ask my doc about the other tests too and I'll certainly post whatever I learn next.

Warmest wishes

Daisy

[Snoddyoddbod in reply to SeasideSusie]

Hi

Asking a very daft question but how do you get a gp or an endo to test for all these things. I've been seeing gp / endo for 4 years now and they only test tsh and t4. The endo did just about manage to test my vit d last month which was non existent. How do I get the rest tested ??

To be perfectly honest most days of the week I feel like something unholy warmed up.

[SeasideSusie Remembering in reply to Snoddyoddbod]

Snoddyoddbod Some members do actually have helpful GPs, but I think the majority of us don't.

FT3 only seems to be tested when there's something drastically wrong with TSH and FT4. I think mine was tested once years ago when TSH was suppressed (unmeasurable I think) and FT4 way, way over range. At the end of the day, it's the lab that decides if FT3 is done and most requests for it by doctors are ignored.

TPO antibodies are rarely tested, and TG antibodies basically never. Sometimes an endo will request them.

What a lot of us do is pay to have them done privately with Blue Horizon or Medichecks (details here thyroiduk.org.uk/tuk/testin... ). It's quite easy to a fingerprick test at home and they are quite reasonably priced. Taking private test results to a GP usually gets one of two reactions (1) They accept them and act on them or (2) They dismiss them but then that is an opportunity to suggest to the GP that there obviously seems to be a problem so if they don't like the private results then test them himself.

As for your Vit D, have you been prescribed a D3 supplement? If so your GP should retest at some point, but who knows whether he is even following the treatment guidelines? Out of interest, what has he prescribed?

If he doesn't retest Vit D, that's easy enough to do with either a home fingerprick blood spot test with City Assays (the lab at NHS City Hospital in Birmingham) which costs £28, or as part of a thyroid/vitamin/mineral bundle from Blue Horizon or Medichecks.

[Snoddyoddbod in reply to SeasideSusie]

Thank you for your reply

I'm on vitamin D3 1000iu daily along with my 150mcg levo

Had RAI last April went super hypo now trying to crawl back up the ladder. Joint pain most nights is unbearable I don't sleep very much as a rule but then once every month or so I completely run out of all energy and sleep for two days straight.

My endo asked if I felt refreshed after sleeping I replied never and she thought I was being funny !!!

[SeasideSusie Remembering in reply to Snoddyoddbod]

Snoddyoddbod I see from your original thread that you say your Vit D was very low. What was the actual result? To be prescribed anything at all it usually has to be 'deficient' and I'm betting you have been given too low a dose to help raise your level. There are also important cofactors needed when taking D3 which your GP won't have told you about because he won't know about them.

Your joint pains will most likely be connected to your low Vit D level. Optimal level for Vit D is 100-150nmol/L

[Snoddyoddbod in reply to SeasideSusie]

I confess I have no idea. The endo said they were very low and told me to take vitamin D.

I seem to get given as little information as possible and am in and out of her office in ten minutes.

I was told when I had the RAI I would be tested at 6 weeks then 12 weeks then three months and then 6 months. The endo is sticking to this regardless of what I'm feeling like. It's like this at what the book says and I'm sticking to it.

Hitting my head on a brick wall is what I feel at the moment

[SeasideSusie Remembering in reply to Snoddyoddbod]

Snoddyoddbod You need to get into the habit of asking for a print out of all your test results. You are legally entitled to them under the Data Protection Act. You don't have to give a reason, but if you feel you need to just say it's for your own records.

See if any results have been sent through to your surgery. If not ring the endo's secretary and ask for them​. Always get the reference range too, they will usually be in brackets at the side or underneath.

The more posts you read on the forum, the more you will realise that we are being let down big time by doctors who don't really know how to treat us. Most endos are diabetes specialists who don't know enough about the thyroid to help us. We have to help ourselves if we want any chance of getting well.

[Snoddyoddbod in reply to SeasideSusie]

I'm certainly getting the impression that thyroid problems are swept under the carpet and left there. Which considering the amount of people suffering is unbelievable

I have to say I'm so glad I stumbled onto this forum given me the biggest boost ever. Just the feeling that your not the only one going through these problems is such a great help.

[Weedaisy in reply to Snoddyoddbod]

I live in America although I'm from NI and well used to the NHS. Obviously we don't have that here in the States so everything has to be paid for. That's how I get whatever blood tests I ask for- they charge me for every one of them!

[mischa]

Levothyroxine also causes hair loss. It happened to ne when first treated. I thought I would end up with no hair It does slow down but every increase of dose had the same effect. I didn't have hair loss on T3 and some loss on NDT. But it does stop when adequately dosed and all vits etc. are in place.

[Weedaisy in reply to mischa]

So it's just a temporary side effect to lose hair? It seems particularly crappy because I have already lost so much in the last year. The falling out had slowed for a while but now it's coming out in handfuls every time I wash my hair.

Maybe thyroxine isn't right for someone with such a low tsh level. I guess I will find out eventually.

Warmest wishes

Daisy

[mischa in reply to Weedaisy]

When I lost hair on Levo, it had nothing to do with TSH levels and more to do with being a side effect of the medication.

[Weedaisy in reply to mischa]

Did it ever resolve itself? Did you have to stop levo? Did your hair grow back while on it? And how were your energy levels? I just want to sleep all the time...

[France1]

Daisy - just a hug

[Weedaisy]

So one month after being given 75mg of levothyroxine daily, my already low TSH (.27) has now got even lower (.05)

T4 is still the same- normal range. I don't get it. I don't understand why he wants my TSH to be even lower! Help!!!

[Weedaisy]

So two weeks on from my last post and more confused and despondent than ever. Help!

I have been on levothyroxine for just over a month now- 75mcg daily. My t4 level was low end of normal but my tsh level was miserably low. I am exhausted, have significant hair loss and depression and anxiety. I thought I would have more energy on the levo but I don't feel any different.

I do look different though- dark shadows under my eyes, dry, pale skin and crappy, split fingernails. My scalp is now shining through what's left of my hair. I'm 53 and feel 93.

I just saw Endo Man and had bloods done again. My Tsh level which was low to start with is even lower now - gone from .27 to .05

He said that it was normal for that to happen if the body thinks it has enough thyroxine

T4 was 1.4 which he thought was ok so he's not increasing the levo but instead wants me to have an iron infusion by IV.

My iron levels were normal at last test but ferritin was a bit low (20)

Anyone else had this? Any success with it?

I'm truly desperate now because the satisfaction of having a diagnosis (hypothyroid) has been taken away- I still feel like crap but I don't know why.

Sorry for being a moan but I'm truly desperate.

Thanks all. Love, Daisy