Advice on Blue Horizon thyroid blood results please

[Highland49]

Dear All,

This is my first post on here but have previously posted on PA.

Have been SI b12 for 4 months. Original symptoms of shortness of breath, fatigue, mouth sores, irritability, balance problems and swimming head. Last two symptoms have been helped by b12 but shortness of breath now a real problem. I struggle to walk upstairs or any hill. Any small amount of housework is out of the question as I just can't get out of first gear and struggle with energy.

I received my thyroid 6 blood results today. Could someone please interpret them? Thank you.

TSH receptor antibodies <0.4 u/L (0.0 - 0.4)

Reverse T3 14ng/dL (10-24)

Thyroid Peroxidase Antibodies 365 iu/ml (Details states positive to autoimmune thyroiditis if >100)

Thyroglobulin Antibodies 97iu/ml (Details states normal is <280)

Vitamin D 67.1 nmol/L (25-75 nmol/L borderline range to insufficiency). Was 70 last October

B12 >2000 ng/L (197-771 so good that my b12 has been absorbed)

Folate 24.6 ug/L (3.9-26.8)

Ferritin 71.6 ug/L (13-150)

TSH 3.86 mu/L fasting (0.27-4.20)

Free T4 16.03 pmol/L (12-22)

Free T3 5.0 pmol/L (3.1-6.8)

Total T3 1.7 nmol/L (1.3-3.1)

Total T4 81 nmol/L (59-154)

Zinc 16.51 umol/L (11-24)

Selenium 2.00 umol/L (0.89-1.65). Why high?

They couldn't check magnesium due to a lab error.

On blood test last month, lymphocytes were low 1.4 (1.5-4.0) and low phosphate 0.75 mmol/L (0.8-1.5). MCH still over range at 33.3 pg (27.0-32.0)

TSH was 3.07 last month, non fasting. Has fluctuated over last few years, 4.95 fasting in 2016.

Thanks in advance.

[SilverAvocado]

Sorry you haven't had any replies! I think it might be because your bloods are a little confusing.

One clear thing is that your vitamin D is pretty low, so you should definitely supplement that. Start on a nice high dose of at least 2000 iu, and make sure you take vitamin K with it.

In terms of thyroid, TPO antibodies is positive, so that is an absolute indication you have Hashimoto's. This means your thyroid will slowly be attacked, and will become less effective over time.

Your thyroid results look like they're still kind of okay. The TSH is the worst, as it's pretty elevated, but probably not quite high enough for a GP to take seriously. They will usually want it over range. The freeT4 is below halfway, which suggests just starting to struggle. And the freeT3 is quite good. FreeT3 is the most important of the 3 numbers, but the body will try to keep it at a decent level while the others are failing - I don't think it helps much with symptoms, tho.

So these thyroid results are not absolutely glaring, even though I'd say they are bad enough they might be causing a lot of symptoms. Are you already doing your own B12 injections? Because I'm thinking you may end up having to self medicate your own thyroid hormones.

I would definitely try to go down the NHS route and convince your doctor to take notice. But they will often wait for TSH to increase out of the range, or sometimes even up to ten. Which means people hanging about for years getting more and more sick.

[Highland49 in reply to SilverAvocado]

Thanks SilverAvocado, yes I found them a little confusing too. Because I do feel so rough at the moment, I expected so much more to be out of kilter.

Regarding the vitamin D, I've been supplementing for a month with K2 so hoping those will improve some of my symptoms soon.

I've had a bit of a battle with GPs already with my b12 problem so have had to buy my own injections. Two GPs regarding my thyroid have refused to acknowledge that my symptoms could be thyroid related. ("Thyroid doesn't cause breathing problems") A third GP at the same practice explained that the lab would only do other tests if my TSH was over 5 so no help there.

Because I am struggling so much at the moment plus getting over a sickness and cough virus, I can't wait for my TSH to increase. Since last night, I have contacted a consultant's secretary that I found out about from the approved list from Thyroid Advocacy (Or somewhere, I loose track of where I've read stuff as been living all this for nearly a year). Just waiting on Blue Horizons to come back to me as I believe that my blood test price included a private referral. If not, I'll go private, which is far from ideal due to mine and my family's finances and problems, but I don't feel that I can go on living like this much longer.

[SilverAvocado in reply to Highland49]

Yes, I agree. You'd probably be waiting years for your TSH to go over range. It's a scandal how badly thyroid is treated

I think self injecting B12 is a lot scarier than self medicating with thyroid, so you are already very well prepared to dive into it!

[Highland49 in reply to SilverAvocado]

That's one positive I'll gladly take tonight. Feel so lacking in energy, still nauseous from a virus and exhausted so will be so relieved when I can have some quality of life back.

Thanks for taking time out of your day to reply. Yes too many others out there suffering with so little knowledge of these conditions by GPs.

[SilverAvocado in reply to Highland49]

You're very welcome. Good luck

[Phoenix605]

Hi, I agree with Silver Avocado’s assessment. The best advice I can give is to learn all you can, including the gentle art of GP manipulation.

Read up on Hashimoto’s and thyroid treatment as unfortunately, you will soon discover GPs are very poorly trained when it comes to the thyroid and rarely look past blood test results. If you go onto the TUK main site there are some good entry level pieces explaining how thyroid treatment (should) work, what the different test results mean and how they interact and a comprehensive symptom list. It is worth copying this list off and taking it to your GP appt, you probably have a fair few you had not realised. Isabella Wentz is a goid source of inf on Hashi, she is a medic and fellow sufferer and has developed good protocols after she ran into the same poor knowledge we face.

Always quantify symptoms like you have above as just ‘tired all the time’ tends to get brushed off (sometimes with the incredibly patronising ‘what do you expect, you have kids, are getting older etc’ whereas ‘i used to do well on 7 hours sleep but am now tired even on 10 hours’ or ‘i used to enjoy hill walking but now struggle with stairs’. Listing specific changes for as many symptoms as possible makes it much harder to ignore. I firmly belive that many Docs assume we are exaggerating so this is not the time to be stoic and downplay! Most thyroid symptoms are generic and they will try to treat individual symptoms as individual complaints and try to trot out with antidepressants, anti anxiety meds, antacids etc rather than look for or accept the root cause.

You need to learn quickly so you can advocate for yourself and point out that yes there are other causes but you are normally a healthy person so an onset of multiple symptoms is likely to be related and as you have an autoimmune thyroid disorder, thyroid treatment should br initiated to ‘ nip things in the bud’.

Dont stick with a bad GP. I saw 4 at my practice until I found one whi was at least willing to listen, I now take an IPad full of backup research and info to back up my need for a dose raise or counteract their misinformed suggestion of a reduction and it works fairly well with my current GP who is willing to learn and work with me.

If you struggle with concentration and memory, take a list if questions with you or a friend for support (someone who can state how much you have changed can be helpful too).

Good luck

[Highland49 in reply to Phoenix605]

Thanks Phoenix605,

I've lost faith in my GPs at my surgery as they appear to know very little about thyroid problems and even less about b12. Previously, I'd tested two senior GPs on their knowledge of b12 blood tests and they didn't know that supplements affect the result. These were separate to the three GPs I saw regarding my thyroid. As I've now gone through the surgery, I've only got locums to fall back on!

I'd seen the GPs on my own about my b12 deficiency but took my husband along for the thyroid ones. Even though my husband was there to confirm how much I was struggling on a daily basis, explaining about the problem of walking up hills, one GP at an emergency appointment suggested the breathing problem was anxiety. The third one referred me to a chest specialist, saying she didn't want me to waste my money on private thyroid blood tests.

So my plan, as you say, read up on Hashimoto's and thyroid treatments. Thanks about the information on the TUK main site. Since contacting the consultant's secretary, I have an appointment for 18th April so at least not long to wait. Ideally, after the consultant's initial treatment, I can then be passed back to the surgery with a full explanation of how to continue.

[Phoenix605 in reply to Highland49]

So we wont blame the breathlessness on hypo, we will blame it on anxiety instead, oh wait, anxiety is also a common hypo symptom and you didnt have either problem before............ Good luck with your consultants appt. It is surprising but consultants in other fields are often more clued up on thyroid and how it affects their field than Endos ( thats because most are diabetes specialists not thyroid ones). It would be worth pointing out to him your thyroid results and whether he thinks the breathlessness could be related as it is a common symptom of un/poorly treated hypo, and then see if he will recommend a trial of levo to get you lower in range (and down to 1 if he is sounding particularly receptive). Getting a diagnosis and treatment started is the first hurdle and there is more than one way to skin a cat - in old vernacular!

[Highland49 in reply to Phoenix605]

From a cynical point of view, the GPs would rather treat by antidepressants as they are supposedly encouraged to prescribe those and be given cash incentives. Fortunately next GP realised I didn't have a history of anxiety so referred me to respiratory consultant but of course didn't make the connection with hypo and breathlessness.

Just keeping my fingers crossed that I've picked a good consultant. Like your analogy!

[Marz]

As others have mentioned your Thyroid Tests do not look too bad When I was diagnosed with Hashimotos here in Crete - back in 2005 - all the thyroid test results were in range. However the Anti-bodies were high and so my GP here prescribed Levo/T4 - which she explained was to support the thyroid whilst under attack from anti-bodies !

Had I been in the UK it is possible I would still be sleeping for hours on end in the day and aching from head to toe ! - without a diagnosis.

Have you researched your Endo on-line ? - is he a diabetes specialist ? From being on Thyroid UK forum for over 6 years - I have read many sad tales of Endos not being as well informed as they should be. Maybe start a new post asking if anyone has seen him ....

Hope all goes well

[Highland49 in reply to Marz]

Thanks Marz. You were lucky to find a GP who knew what they were talking about. I expect it still took long enough to feel better though!

I found the consultant from the recommended list through Thyroid Uk. The write up for him stated "friendly and approachable and to be genuinely interested in having my perspective. He explained things clearly, provided reassurance (about T3) and inspired confidence. He told me he'd be happy to see me again if necessary and to contact his secretary if I had any queries. Al in all, a really positive experience".

His overview in the Bupa website mentions that he is an experienced physician, managing a range of endocrine disorders, with particular interest in pituitary disorders, thyroid disorders/surgery, adrenal disease, parathyroid disease and diabetes. I hope I'm in good hands!

There's also an NHS endo a bit further away in my county of Hampshire who was mentioned to be happy to prescribe a trial of T3 so I have her as back up.

Just one little question to ask Marz if I may, did you have a burning throat when all yours started? Have had that for a couple of months, along with the croakiness.

[Marz in reply to Highland49]

I think throat issues are quite common with Thyroid problems. Everything is so close and inflammation can feel like burning - as it does in other parts of the body ! Croakiness too - as the thyroid presses on the vocal cords. I have also read that the tonsils and the thyroid share a blood supply - possibly why tonsils are left in place more often these days ! I was aware of a fullness in my throat from all the nodes - but seems fine now. I have lost the ability to reach the top notes when singing - which causes me great sadness. There are two Tina Turners stuffed inside me !! It could also be due to lack of practice .....

Fingers crossed the Endo comes up trumps. If not you can always come back here and have a moan

[Highland49 in reply to Marz]

I was never much of a singer! Yes maybe you are just out of practice 😊 thanks for your support and information. Good to know your throat is ok now.