Struggling with hypothyroidism...

[Lollyq]

Hi everyone, I am very pleased to be part of this forum! This is my story so far (just to give a little background and my bloods results)

I started having mild hypothyroid symptoms nearly a year ago now but really didn't think anything of it. All my life I have been very active with a healthy diet. I had just started a relationship with my current partner so started birth control which was the implant. I noticed that I was gaining a few pounds but I just put that down to dating and birth control. I then had an operation mid October 2015 and couldnt work out for 6 weeks so during that time I gained weight, more than I thought I should of. When it came to December my diet was that of a fitness professional (my partner is a personal trainer) and I was training very hard and everything was just so much more effort and I was constantly tired. I managed to shift a few pounds but not near the amount I thought I would. I had a week off over Christmas, gained it all back, worked hard through January with the result of no further weight lost. I was beginning to notice more and more symptoms of hypothyroid so I went to my Dr in February.

I knew what hypothyroid symptoms were because my eldest brother developed hypothyroidism at around age 11 but was only diagnosed when he was 16 and is now on 175mg of levothyroxine.

I had blood tests to check for hypothyroid but they came back 'normal' apart from a vitamin d deficiency. I didn't know to ask for the results then. All I remember is that my vitamin d was 17.

As the months went on I got worse and worse symptoms and could barely get out of bed. I had even changed my birth control to the contraceptive patch because I didn't know if it was that that was causing it.

This then brings me to June this year, because I had been experiencing the most painful period cramps, I was back and fourth to the Dr's addressing that when he saw I had gained a stone in a month. I then asked him to check my thyroid again because my mother had just been diagnosed with hypothyroidism and I knew he treated my brother in the past.

Sure enough, I was right.

My blood results were as follows:

(17/06/16)

Free T4 - 9 (12 - 22)

TSH - 31.9 (0.27 - 4.2)

I was put on 25mg of levothyroxine and sent on my way.

Things did not improve, I had another set of thyroid tests with the following results:

25/07/16

Free T4 - 13.8 (11 - 23)

TSH - 5.4 (0.27 - 4.2)

TPO - 9 (< 34)

I was told I was doing well on 25mg so the Dr wanted to keep me on it. I asked for my T3 to be checked but the DR said it would be pointless because I am not hyperthyroid and spoke to me like a piece of rubbish.

Nothing improved, if anything I have gradually got worse. I went back last week for another lot of tests. I went to another Dr to discuss my results. They were:

Free T4 - 18.1 (11-23)

TSH - 3.1 (0.27 - 4.2)

TPO - 9 (<34)

This Dr said I had obviousiy 'improved' so much on 25mg he wants to keep me on this dose. However he was alot more understanding of my symptoms so contacted the labs to do further testing on that sample. I asked him to request the t3 and he did so with no hesitation. He then called me back at the end of the day and told me that I am B12 deficient:

B12 - 168 (197<)

So I have been booked in for 6 B12 shots over the next 3 weeks.

My Ferrtin is: 68 (13 <)

And he said the lab couldnt do my folate and they also haven't sent my T3 back or even acknowledged it. And I had a negative result for being celeiac.

My question is, are the vitamin deficiencies the missing link? Do they cause hypothyroidism or does hypothyroidism cause them? If they have caused the hypothyroidism then what has caused them?

Should I still push for my T3 to be tested? Or shall I see how I fee with the B12 shots?

It's all so overwhelming and I not sure where to go from here.

Thanks in advance to anyone who replies, this is a pretty long post!

[NatChap]

i would still push for the T3 test (although you may have to get it done privately) but I would imagine that you feel a significant improvement after getting your B12 and Vit D levels up. I would also supplement iron to try and increase that further (do you have the range for that?) 25mcg is a very low dose so i doubt that will be sufficient long term, especially as ideally you want your TSH below 1.

[Lollyq in reply to NatChap]

Thank you NatChap,

I don't have any levels for that but when I next go back I am going to ask for a full print out of all my test results from this year.

I will still push for t3 or get it done privately then. I asked the Dr if I would be prescribed t3 if it is low and he said 'No they don't do that in this country, I would just up your levothyroxine'

[NatChap in reply to Lollyq]

Upping levo is the first step. You may be someone who does well on it and it's easier to obtain than other meds.

[Lollyq in reply to NatChap]

I really hope I do well on Levo! I'm surprised this hasn't been upped so far though.

[CarpaBob]

Vitamin deficiencies effect the conversion of thyroid hormones and often go hand in hand with hypothyroidism. what treatment are you on for your vitamin d. Really you need to know your folate result if you're starting b12 treatment as they work together.

Your tsh is still a bit high and I suspect you would do better with an increase of levothyroxine as 25 is a very low starting dose. The guidelines state that symptoms should be considered alongside test results and you may end to bring this up with your doctor.

In terms of your b12 what symptoms do you have? Have you looked at b12deficiency.info/signs-an... as this will determine the treatment you should be receiving.

[Lollyq in reply to CarpaBob]

Thank you for your reply, when I got back to the Dr's on Tuesday I will be requesting another blood test for the rest of the vitamin and minerals associated with hypothyroidism.

Every time I have asked for an increase of Levo the Dr says that they do not want to, incase I go 'the other way'. And because my b12 was low he stood his ground that it was the b12 causing my symptoms.

My main symptoms are the tiredness, fatigue, no energy, weight gain and being exhausted all day but not sleeping at night.

I will look into that link, thank you.

[SlowDragon Administrator]

Yes, you need your FT3, folate and Vitamin D levels checked.

Your TPO thyroid antibodies are negative as they are below 34. So your GP would consider that you do NOT have autoimmune thyroid - called Hashimoto's

HOWEVER you can have high TG antibodies, even if TPO are low. It is much rarer, but it does happen. If you had high TG then you would have Hashimoto's. Will your GP test for TG antibodies?

Do you know if your bother and/or mother have Hashimotos? Have they even been tested?

Your ferritin looks low - can you find out what top of the range is?

Once you start B12 injections, I would suspect your TSH may rise, indicating you need higher dose of Levo.

As everyone has said, 25 mcg is usually a starter dose.

I assume you know that you must take your Levo on its own, no other medications for at least 2 hours (4 hours for Vitamin D, calcium and magnesium) . Must be taken on an empty stomach and no food or drink (especially tea or coffee) for at least an hour after. If taking first thing in morning is tricky, you may prefer taking at bedtime. There is some research showing it may also be more effective. It must be at least 2 hours after you have eaten, longer if had a large, heavy meal.

Lastly, a coeliac test would be good (though it is notoriously unreliable).

If you can't get tests done by NHS, then like many here you can get done through

thyroiduk.org.uk/tuk/testin...

Blue Horizon - Thyroid plus eleven test check all this

[Lollyq in reply to SlowDragon]

I take vitamin D for my deficiency but I could do with getting it checked it again to see how it is doing.

I will see if I can get the TG anti bodies tested. As far as I am aware my brother and mother do not have hashimotos, but I am not sure if they have ever been tested. My brother never grew through his teens because of it and was extremely over weight. When he was 16 they xrayed his hand and he had the skeleton of an 11 year old. As soon as he started taking Levothyroxine he responded really well and grew immediately, as much as an inch a month. After a few years he was completely 'normal' and tall and had dropped all his weight. I speak to him occasionally and he swears by levo but his experiences are hard to judge because he started self medicating with illegal drugs and is now a heroin addict, which is sad really.

Oh I never realised the B12 could make my TSH rise... I will make sure I get another test soon in 6 weeks. I am going back to the docs on Tuesday so I am going to write a list of everything I need to get tested. I'm devestated they are keeping me on a minimum dose but I don't know what else I can do.

Yes I read about when is best to take it and I am very careful as to when I do. I take it correctly.

I had a celiac test done and all was said was that it is negative.

If I have no luck with with requesting tests I will be ordering from BlueHorizon.

Thanks for your reply.

[CarpaBob in reply to Lollyq]

What you can do if the gp won't help is write a letter to him, polite, asking he reconsider. Quote the guidelines and the sections supporting like the treatment of symptoms over test results. You could also request a referral to an endocrinologist for the thyroid. Another option is to change gp surgery, the laws have changed now and you can register at a surgery for reasons such as nearest to work, nearer to children's school etc.

[Lollyq in reply to CarpaBob]

I never knew that, that's fantastic.

And a great idea about the letter, I would definitely prefer to be seeing an endocrinologist.

Kind Regards.

[greygoose]

Are you sure about that?

[greygoose]

OK, I've never heard that before. And false rumours do get spread. Like people keep saying you can buy it OTC in France, and you really can't.

[Angel_of_the_North]

You need a dose increase whatever - your TSH is too high (should be under 1) and your FT4 too low (should be top quarter of the range). 25mcg is a starter dose for the elderly and infirm. I don;t think your GP is very knowledgeable; I'd ask for an endo referral (to one on the TUK list)

[Lollyq in reply to Angel_of_the_North]

Ive been pushing for an increase every time but they just refuse. I am definitely going to ask to be referred to an endo as the GP's just aren't willing to work with me.

Thank you for your reply

[greygoose]

Very true!

[Angelic69]

How to heal your thyroid and adrenals view this video on YouTube its by a guy called john. Talks about how our endocrine system receives inadequate supply of hormones because other substances have taken there place, hence the cells don't have what they need to make the hormones. The things that cause thisd problem are In our diets, he says by irradiating these substances out of our diets we I eradicate the disease.

[Lollyq in reply to Angelic69]

Oh wonderful..! I will take a look.

Thank you!

[Lollyq]

Oh wow this is so fascinating! I will look more into this! I went to my gp today and they took more bloods to test my t3 so fingers crossed that comes back with something! Not that they said they would prescribe me it anyway. But I can always find a way of sourcing it myself.

Thank you for your reply it's very interesting

[Lollyq]

I've just researched... this is really fascinating.

And very ironic because my father is going for an MRI scan on his pituitary glad next week, due to abnormally low testosterone levels. I must urge him to get his thyroid checked, if he hasn't been already.

I'm assuming that the hypothyroidism comes from my mother, even though she has just been diagnosed. But the pituitary gland fault from my fathers side is interesting. It could be a combination of both genes causing the problem...

[Lollyq]

I literally just told him to get it checked but he just shrugged it off but hopefully I can convince him. He very rarely goes to the Dr's it's not good.

That's crazy ha ha!! It will be interesting to see if my father has.

I have one other brother who is fine. But so far there's 3 out of the 5 of us that have it!