New and struggling to get diagnosed (central hy... - Thyroid UK

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New and struggling to get diagnosed (central hypo?)

Shutterspeed25 profile image

I've been presenting to my GP and local hospital with chronic exhaustion, weight gain, low mood and muscle pains (severe enough to have me using a walking stick any time I know I'm going to be on my feet for more than 30 mins solid or walking uphill/upstairs) since May. In July I had a whole-head MRI done, revealing a pituitary microadenoma (3mm). This was followed up with a few blood and urine tests which showed normal cortisol, slightly raised LH and FSH, and notably elevated prolactin (in the 700s).

My endocrinologist has seen my most recent blood test results of FT4 at 9 and TSH at 1.2, and knows I have the microadenoma. But today I've received a CC of a letter from him to my GP saying those levels are acceptable, and that I should be re-referred to rheumatology and/or psychiatry, with not even a passing mention of the pituitary tumor.

Surely this can't be right? I have done some of my own surface research into thyroid conditions, because I am left without care or support for months at a time between endocrinologist appointments and I'm just not the kind of person who can sit and wait for someone else to solve my problems. My T4 result is below what's considered acceptable by the blood lab (it should be 12-25), and the low T4/normal TSH in combo with my microadenoma seems highly indicative of central hypothyroidism. On my copy of those blood results, the lab technician has even noted the incongruence and advised 'consider central hypo'. Why would my endocrinologist totally discount this?

This is taking a massive emotional toll on me. I'm struggling to work and rapidly losing friends' sympathy. I'm desperate for anyone's thoughts on central hypothyroid and how I can help myself or push medical professionals to help me. I'm close to looking into obtaining levothyroxine and T3 supplement from the USA and self-medicating, as many people seem to, but I don't know where to begin or whether I can afford this.

17 Replies
SeasideSusie profile image
SeasideSusieAdministrator

Yes, that does suggest Central Hypothyroidism with a below range FT4. All the evidence is there, as is the obvious ignorance of your endo. Ask your GP to refer you to a proper thyroid specialist (most endos are diabetes specialists and I expect yours is, which is why he's ignored what the lab technician has written - goodness me, we can't have a lab technician knowing more than an endo now can we 😱) or a pituitary specialist.

Hi Susie, thank you, this is good to know. People have been so openly hostile about me doing my own research and giving importance to the adenoma (doctors and 'friends' who I vent to about all this alike) that I find it hard to trust my own judgement at this point.

It blows my mind that a qualified endocrinologist can just... miss this entirely. Surely this is basic diagnostic knowledge anyone can comprehend.

I am being referred to another endo at another hospital (St Barts- I'm London-based) who wants to give me a second, more pituitary-focused MRI, but I will be waiting until mid-March for that appointment.

Make sure they are a thyroid specialist, not just someone with an 'interest' in thyroid. I agree that your first Endo is ignoring evidence and you need to push for the correct diagnosis. You need FT3 testing along with the other thyroid hormones to help confirm central hypo I believe.

My free T3 was tested and came back at 4.5- just barely within the lower half of the acceptable range. There was nothing noted about it.

SeasideSusie profile image
SeasideSusieAdministrator in reply to Shutterspeed25

Shutterspeed25

A couple of links about Central Hypothyroidism:

Your doctor should be able to read the whole of this article, we can only read the Summary and Definitition:

bestpractice.bmj.com/topics...

Also:

ncbi.nlm.nih.gov/pmc/articl...

and this one says

"The hallmark of CH are low serum levels of circulating free thyroxine (FT4) into the hypothyroid range associated with low/normal serum TSH concentrations."

It doesn't mention FT3, just low FT4. Our bodies will do everything it can to make T3 as that hormone is needed by every cell in our bodies: endocrinologyadvisor.com/ho...

Thanks, I will be trying to get hold of my GP ASAP and bring these with me.

It seems like the big source of contention between the doctors I’ve seen is whether or not my T4 actually counts as low. I’ve had two results of 9 and one of 11 in the last 3 or 4 months, which some endos insist is ‘normal variation’ and couldn’t be causing my symptoms. They seem mystified as to what’s causing me enough pain and weakness to warrant using a walking aid, hence their keenness on getting me to Rheumatology instead... but I’ve seen many confirmed thyroid patients complain of walking difficulty.

SeasideSusie profile image
SeasideSusieAdministrator in reply to Shutterspeed25

If your results are 9 and 11, and the range is 12-25, then how can your doctors not agree that those results are low, they're not only low they're below range so what other way can they possibly describe it? I despair, I really do.

The problem seems to be that that range is used by my GP, but the hospital uses a different range that starts at 10. So at 11 I’m considered more than fine, and my symptoms are dubbed ‘extreme’ and being put down to either rheumatism of some kind or psychological issues.

SeasideSusie profile image
SeasideSusieAdministrator in reply to Shutterspeed25

If your GP and the hospital use different ranges then they are not interchangeable. You cannot take the result from one and use it with the range from the other. You will not have the same result when the range is different.

What are the results from your GP, with reference range.

What are the results from the hospital, with reference range.

When you have those you can work out how far through the range you are, or see if you are under range. So if you post those results we can maybe help you further.

Also, bear in mind the quote I gave from endocrinologyadvisor.com/ho...

"The hallmark of CH are low serum levels of circulating free thyroxine (FT4) into the hypothyroid range associated with low/normal serum TSH concentrations."

Low means low, so low can be low in range or below range.

Sorry, essay incoming...

GP bloods on 25/10/19:

TSH: 1.2 (acceptable range 0.5-5)

FT4: 9 (acceptable range 12-25)

'A couple of inflammation markers but it's probably nothing'

Hospital A bloods on 30/10/19:

Endo said T4 levels, LH and FSH and some vitamins were 'a bit low' and prolactin was 'high but asymptomatic so we'll leave that alone', but hasn't shown me the exact numbers or the range she's using. I am in an email/phone loop with PALS right now trying to get my own exact results disclosed to me.

Hospital B bloods on 21/11/19:

TSH: 1.1 (acceptable range 0.4-4)

FT4: 11 (acceptable range 8-31)

FT3: 4.5 (acceptable range not given)

Antibodies: 'not concerning'

CRP: 9 but this was put down to me having a very mild viral cold at the time

Iron: 6 (acceptable range 11-21)

Prolactin: 1045 (acceptable range 200-400, but being dismissed because I have no reproductive system symptoms)

I have consistently low iron which nothing seems to fix (tablets make me vomit), and am already on 3-monthly B12 injections (have been for about 10 years at this point.) My vitD fluctuates wildly but is currently quite high (I finished a run of tablets in September and am using a SAD lamp in winter). An MRI in June showed a micoradenoma of 3mm on my pituitary gland; a bone density scan in August showed I have no osteo issues. I've had several cortisol checks and they're normal.

Family history: my maternal grandmother has had hypothyroidism for years; my mother has psoriatic arthritis; both of them have lifelong iron and vitD deficiency issues; two of my cousins have pitu adenomas (one had neurosurgery removal as hers grew to macro size and threatened her fertility and eyesight).

All my doctors consider my symptoms 'too extreme' to be caused by these results. My main symptoms have been a steady weight gain of 3stone since late 2017 despite dieting and exercise, horrible brain fog and low moods and severe daytime sleepiness since mid-2018, and frequent pains in my hips, heels, thighs/calves/shins and the small of my back (in the muscle tissue NOT the joints) since spring 2019. I have taken to using a walking stick when going any further than just down the road to the shops, because tackling hills and stairs or walking/standing fro more than about 30 minutes is needlessly painful, and I think they're overstating the severity/importance of what I need the stick for. I also have a long history of general depression and anxiety, so Hospital B overwhelmingly wants to lay all of my problems at that door and call it my own fault for being such a neurotic.

All this taken together, you can probably see how I'm starting to get confused and overwhelmed beyond the point of what I can cope with.

Hi Shutterspeed, I'm struggling with "suspected" Central Hypothyroid, with low TSh, Ft3 and Ft4and very similar symptoms to you and Thor63. Just wondering how you're getting on and did you ever get a clear diagnosis of CH? I haven't been able to find any "CH" Specialists, it's difficult enough to find Endocrinologists with much of an understanding of the thyroid and how to treat it effectively. I've also been wondering about NDT as an option?

Hi! It's been a year since this thread but I thought I'd hop on and let you know how it panned out for me, because I know the nightmare you're probably stuck in right now.

Frankly, I had to get my 'hysterical young woman' persona on in late 2019 and chase/complain/cry repeatedly to my GP, a private consultant, and 2 NHS hospitals to get a second MRI, have CH acknowledged on my files and be allowed to trial levothyroxine. I was put on 75mg daily in January and felt like a new person by February! I can't believe how much better a state I'm now in than how I was this time last year. I only need a normal 8hrs of sleep, have shed a stone and half even in lockdown, and haven't used my stick for months. I'm now also entitled to annual MRI scans and eye tests to make sure the adenoma isn't growing.

Ultimately, putting pressure on my prescribing GP was more important to accessing the treatment than what two endos said. So keep hammering at yours- it's worth it! Just make yourself as annoying and incessant as possible. Send them 'helpful' extra info, symptom diaries, the works. Let them know about every headache twinge that crosses your brow, and reiterate about suspected CH. Point out your current endo's failings and push for referral for a second or third opinions. There'll come a point where it's less costly for them to send you for a scan and a trial run of levo than it is to keep fitting you in for callback and catch-ups and check-ins.

Good luck with everything, I really hope they get their act together for you!

Thank you so much. I really appreciate your reply. I'm so glad that you're feeling much better on Levothyroxine and that all your persistence and perseverance seem to have paid off. It's such a journey of endless trials and tribulations and I'm also sure that my "suspected" CH has been at the root of much of my misery over the past decade or so. My Ft3 and Ft4 have been knocking around on the floor of the "Normal" range over this whole period of time, with a TSH of below 0.1, which is the only measure that they seem to be concerned about - "Hyperthyroid" whereas all my symptoms scream Hypothyroid! I'm sure it's CH but can't find a specialist willing to consider CH as a potential cause! Thanks again for sharing your glimmers of hope! Slainte!

Hi, I too very similar symptoms, private gp treating me with levo, t4 slightly higher than yours, referred to rheumatology by NHS recently as diagnosed M. E, CHRONIC FATIGUE 6 years of hell, very unwell, recent private gp, said he is treating my symptoms and my ranges are not normal and he is not liked by NHS but has patients feeling better with treatment. Don't accept being flopped off, I wish I seen this gp years ago. All the best

Thor63 profile image
Thor63 in reply to Thor63

Please don't accept the label neurotic, it disgusting, be firm and insist on help, good god I wish I had known more about thyroid being untreated when patients suffer life changing symptoms, it's like running a car on lemonade, every cell in our body, car component is affected and will not work as it should 🤔🙄😐 hence shutdown and feeling very poorly. Take care

NieuwOndaatje profile image
NieuwOndaatje in reply to Thor63

Hi Thor63, I'm struggling with "suspected" Central Hypothyroid, with low TSh, Ft3 and Ft4and very similar symptoms to you and Shutterspeed. Just wondering how you're getting on and did you ever get a clear diagnosis of CH? I haven't been able to find any "CH" Specialists, it's difficult enough to find Endocrinologists with much of an understanding of the thyroid and how to treat it effectively. I've also been wondering about NDT as an option?

I feel your pain. Ive been having a horrible psoriatic arthritis flare ever since I lost my thyroid to cancer 3 yrs ago and I'm not seeing and end to it anytime soon as I hobble with my cane.....I quit my job and lost my health all to being thyroidless.

I do love the people who think talking a couple of pills everyday can make me as good as I was before I lost my thyroid.

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