Low thyroid, primary billary choloongitis, age 45 and female (plus cancer, but that's sorted...)

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I am nearing the end of my tether and would love some advice as to where to start, what to do to make myself feel like myself again. I feel the NHS aren't looking after me but rather dealing with bits of me.

8 years ago I was diagnosed with breast cancer, double mastectomy and radiotherapy. I had a very small baby and had a miscarriage. Unfortunately I was misdiagnosed as having mastitis for a very long time and it was only by accident I got the correct diagnosis, I am lucky to be alive. This is only relevant in that it has made me very wary of the medical profession.

I lost a lot of weight at the time, I was considered lucky it came off so easily after the baby. Now I wonder if my body had high thyroid issues caused by the pregnancy.

Just before my 5 year cancer final check up I had awful symptoms so the cancer unit did all the tests and scans they could for me. Wonderfully I came back clear of cancer. However I was referred to my GP to deal with a thyroid issue. I was placed on 25mcg of levothyroxine. I wondered if I was menopausal but I wasn't.

The symptoms got a little better, but not much. I asked to go on to a larger dose of levothyroxine but my GP shouted at me and got really angry-he said I was fine. I started taking 50mcg anyway and luckily I managed to swing it so that my prescription was changed so I could carry on taking this amount. I staid with the practice but see a different GP.

My initial symptoms were,

• sickness and nausea especially in the morning. *dizziness *tiredness that left me unable to work. I was sleeping 20 hours a day. *putting on weight, but I was skinny so I didn't feel that mattered.

My current symptoms are
*fluffy headed
*can't think of words

• putting on weight really quickly, I have never put on weight before but I can barely eat for a few days and put on 3 lbs. I have put on almost a stone in a year, most of it in the last 6 months, most of that in the last 3 months. It doesn't stop. *tiredness. I can work but I need naps. I nap at least a couple of times a week, i could nap for hours but have to set my alarm. I do this in my lunch hour.
• my hair is thin, but it always has been, I think I have a big adam's apple but maybe it;s a goitre, my eyebrows are patchy but maybe that's to do with over plucking in the 80s.

I have recently been diagnosed with primary billary cholongitis. The liver specialist who diagnosed me has told me twice that he considers 50mcg to be too low and suggested 75mcg. He said that the 25mcg initial dose was laughable. The first time my GP told me the specialist was wrong and hadn't got recent blood tests which were within range. THey wouldn't give me any more levothyroxine as that would make me ill. The GP emailed my results to a endocrinologist who agreed with the GP. The second time the liver specialist said he was not wrong and he wanted my symptoms treated, and that 75mcg wouldn't do the harm the GP said it would. I have an appointment with my GP next week.

What do i do?
What do I ask for?
Am I just menopausal?
How do I fight the system when I have no energy?
If I have money to throw at the problem ( I don't but am getting desperate) where do I throw it?

I have some printed out blood tests from the past which I asked for but I don't understand them. I have trawled the internet but don;t seem to see the bloods they talk about on my tests.

Am I doomed to becoming overweight and slugish, is that my life?

SOrry it's long and feel free to ignore. I will be back and forwards as I've got to take the kids out and then work.

Thank you

Start by asking for a print out of your recent blood test results. The object of treatment for hypothyroidism is to get your TSH down to about 1, or even blow, and your FT4 into the top 25% of the reference range. If your print out shows that those two results are coming back within the reference ranges, but not in the optimal range, then you will need a change of dose.

If you're under 50 and don't have heart disease, the starting dose of thyroxine should be 100mcg. Anything lower just delays feeling better and most people level out at between 100 and 150mcgs anyway.

Your symptoms suggest you are badly under-medicated.

The blood results you have should show TSH, FT4 if you're lucky and you may have had TPO done on the NHS. You also need to ensure that iron/ferritin/vitmain B12/folate and vitamin D are at good levels, otherwise your thyroxine won't work. Have you had those tested?

Thank you so very much.

I'll go to My GPs now and ask for my recent bloods. I'm afraid I don't know what I was tested for.

I do know I have to take prescribed iron supplement as my iron was very low. The gp told me that the endocrinologist told her that the low level was making me tired.

Thanks again, I'll put my bloods up when I've got them

I am under 50, I'm 45. I have no heart complaints.

14 June 17 bloods

Thyroid function test, normal no action;

Serum TSH 2.06 miU/L ( range between 0.27 - 4.20)

Serum free T4 13.4 pm ol/L ( range 12.00-22.00)

B12/folate normal no action

Plasma b12 485 pg/ML ( range 197.00-771)

Serum folate 8.8 ng/ML ( range 2.90-26.80)

There is a whole other list of things one of which is
Thyroid per oxidase and ( tpo)
Normal no action
22 out/ML ( range 0.00-34)

So no, my TSH is at 2.06 rather than below 1.

My T4 is in the bottom 10 % of the range ( I think ish anyway!)

What now? Go back to the GP and say I don't like the way they do things-eek?

Hello

Sorry to hear you are feeling unwell and struggling to manage your GP

Do you have any recent results for your Iron Bloods?

Ferritin and Hb?

I would agree with all responses so far, and hope I can offer some support too.

Did you realise that the symptoms of your Liver condition and Hypothyroid are related,

Have you seen this:

http://www.nhs.uk/Conditions/Primary-biliary-cirrhosis/Pages/Symptoms.aspx

Also if you have one Autoimmune condition you are more prone to also having other Autoimmune conditions, and symptoms of all these things including "at our age" can be very similar but non specific at the same time.

I hear you on the "Do I really have the energy?" part of it all

Sorry forgot to ask what Iron are you prescribed and dose?

Thanks coconut too.

Again the bloods on 14 June said

Ferritin 12 ug/l ( range 13.00-150)

For that I'm taking 10ml of Galfer syrup twice a day. That's a 45mg of ferrous fumarate per 5ml. Only I'm struggling to take that amount as it makes me sick, it's disgusting.

I've only been diagnosed with the Pbc for a few weeks. A scan today shows no liver damage and a lean liver. I had read that page , thank you, i hadn't really taken it in though. I hadn't realised about the dizziness.

I think what I want is to be put on a reasonable dose of levothyroxine, then if my symptoms don't improve I'll know that I'm living with the symptoms of whichever autoimmune illness is peeing me off BUT I'll know I've done my best. If the symptoms do improve then that would be the ultimate.

OK that's a good plan, about the Levothyroxine, however, your Ferritin is too low, and although you have been prescribed a good dose of Iron, you need to be careful how you take the Iron as it will affect the Levothyroxine absorption if both taken too close together and if your Iron levels are not optimum then you will not get the best affect from any Levothyroxine you do have in your system. Catch 22.

I agree your Thyroxine dose is most likely too low though your TSH is not that bad (however everyone is different on how they feel at different levels, and Doctors are supposed to look at symptoms as well as blood results, as in the whole clinical picture) your FT4 is definitely too low to be optimum and something is causing these symptoms, maybe more than one thing. Some people also do not convert T4 to T3 very well, which is the form actually used by the body, and the NHS do not test T3. Even if you go private and get a T3 blood test, it is very difficult to get a prescription for T3 from anywhere at a reasonable cost. But that is something which may not be going on for you, there are other things to consider before possibly needing to be going down that road.

Your Ferritin is your Iron storage level in your body only. You will need another FBC and Ferritin to check how well you are actually absorbing the Iron or even absorbing it at all. If you have very heavy periods this will impact on Iron levels, if not then the cause of low Iron needs to be investigated as can be potentially serious cause (don't want to worry you too much though ).

Did you have a Full Blood Count? Do you know your Haemoglobin level? MCV?

Are you taking your current dose of Levothyroxine in the morning with water only and no milk, calcium, iron or other supplements for several hours later? From memory I think its minimum four hours for Iron and two hours for Calcium, including milk, caffeine also affects absorption of Thyroxine, so if you are taking it with a brew and or cereal with milk for example, you could try taking only with water, however it will take six weeks to have full affect, and without blood tests you will possibly only have symptoms to go on, and it may not only be Thyroid going on as already mentioned. Another thing to try is taking Iron with a good dose of Vitamin C to maximise any absorption. I realise it can feel like there are not enough hours to fit it all in almost! All supplements taken can also affect Thyroxine blood results. Another Catch 22. But you will get there, and there is lots of support on here, do you have another GP appointment booked, and are there any other GPs either at that Surgery or another Surgery you could change to?

I've been setting my alarm for 7am and taking my thyroxine then actually getting up at 7.30 with a big mug of builders . That's difficult enough so sometimes I just take the two at once.

I don't want to give up my tea! It's my only vice. I knew you weren't supposed to have iron within 4 hours of having dairy which is difficult if you like tea, and milky tea at that.

I'm vegetarian, well I was, I now eat fish, but not often. I assume that's why I'm anaemic. I've always had problems with it.

You're right about fitting it all in! I'm going to have to do some readjustments to my lifestyle.

So, I'm going to ask GP to up my thyroxine. I'll also ask her to give me iron tablets instead of the syrup. That's so I can take it to work with me, more chance of fitting it in, also the syrup makes me gag.

Not much chance of changing practices, but I could try. I could see a different gp at the current one but I don't think it will help.

I've had full blood tests done I'll put them here. I'm tired now, I go to bed with the kids!

Thanks so much coconut and timeistight

Yup, that FT4 should be above 17 on that reference range. It's a one to one conversion, so FT3 will be low too, and that's what gives the symptoms.

Ferritin is way too low. It needs to be over 70 and preferably round 100. Folate and vitamin B12 also need a boost and, having seen those, I would expect vitamin D to get low too. It would be worth asking for that to be tested as well. Low levels in these inhibit conversion.

TPO look negative, but this doesn't mean your thyroid problem is not auto-immune. For some reason the NHS only tests one type of antibodies.

Of course, if ferritin us below range, it's worth you asking for an infusion, rather than tablets. Fix your ferritin levels in one go.

Time, thank you so much too!

An infusion, heaven, that would be one thing sorted, and one thing less to worry about. I'll ask about that too.

I bought some vit D and b12 but stopped taking them as it just seemed like another thing. Can you get those in an infusion too? Like a celeb?!

Yes something linked to my t3, TPO was negative. Maybe I should just blank out the identifying details and photograph the results.

I had low folate and ferritin (also hashimotos, ME, factor I deficiency and endo so complex) and kept falling asleep every time I sat down. It was bad, crushing fatigue, like ME fatigue amplified. I couldn't function at all. Apparently, the low ferritin and folate (my results were 13 and 4.something so similar to yours) were preventing my thyroxine converting properly.

I was put on folate, Sytron and levo was upped. I'm only just starting to feel a fraction better after weeks and weeks of treatment. ME is still just as miserable but im functioning at about 50%, it was half that before. My TSH must be kept under 2 as per endocrinologist instruction and my ferritin is monitored due to clotting deficiency.

Hope you feel better soon. I have all your symptoms and it's a hard life.

I also second everything coconut said with regard to taking meds seperately. If you do have heavy periods (I suffer terribly, endometriosis and clotting problem) tranexamic acid may help. My vitamin D was low, megadosing helped a little. I have no 'vibrancy' though, at 33 I feel old. Pensioners can do more than me.

If it's any consolation, I think I have an autoimmune condition they haven't found yet. They've stopped looking now I'm in the ME camp.

That sounds awful Mama, I'm glad to say I don't feel as bad as thst- not now anyway.

I'm amazed at how much information you all have. I was just told my thyroid was low, take this, come back in 3 months.

I'm off on holiday but managed to get a GP appointment as soon as I'm back. I'll ask for a higher dose of thyroxine , an infusion to cover the ferritin. If she refuses I'll look to see if I can change practices but it's London so unlikely-they're full .

I'll report back

Thanks again.

Frustrating but some good news.

I can take 75mcg for 6 weeks then gp will take my bloods again. This is against endocrinologist advice-gp asked endocrinologist.

They won't give me an infusion as I can tolerate liquid iron. I'll look into going private. Gp said there was no need and it would cost me a fortune but I'll look into it at least.

She thinks I'm peri menopausal and that's what's causing my symptoms. I've put on another 4lbs in a week of eating salad and swimming for hours a day....

Oh, and gp says it makes no difference when I take the liquid iron and the "don't take it within 4 hours of dairy is rubbish".

Apparently my haemoglobin has risen since the June blood tests so I'm not anaemic.

What hope do I have if an endocrinologist at UCH says I'm fine ( gp wrote to them)?

Am I being arrogant to suggest Internet forums know better than medics? Or that a gastro specialist knows better than the gp and the endocrinologist?

A heamotologist put me on liquid iron because it's better! Kinder on the stomach. The same consultant told me not to eat dairy with iron or thyroxine. The reason my T4 divebombed was because I was taking it with my morning brew!

A different GP, maybe!

I would have to move practice and that's not necessarily possible but I'll look into it.

To be fair this gp is doing her best for me.

I'm going on 75mcg thyroxine and after 6 weeks she'll do my bloods and revue. She's worried about over medicating me.

It';s quite difficult to over-medicate people because being over-medicated feels so unpleasant. Go for the 75mcgs and go back for another test in six weeks or so (first thing in the morning/fasting).

You do however, need to get that ferritin up. Your Hb may be fine, but your ferritin definitely isn't.

patient.info/doctor/non-anaemic-iron-deficiency

Thanks.

Yes, I was talking to the GP about the low ferritin and she kept talking about my Hemoglobin being fine. It was frustrating. I suppose I'll just carry on with the ferrous fumerate. The infusion would be £200 consultation and £450 for the infusion, it's money I don't have. I'm also a bit concerned as I've read you can go into anaphalaptic shock, and I hate, hate, canulas.

Great advice about doing the fasting blood test, and without having taken any medication. I wonder why she didn't mention that.

I'm having FBC, thyroid function and ferritin tested.