Results back from GPs mistery solved. Not. - Thyroid UK

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Results back from GPs mistery solved. Not.

PoppyRose profile image
36 Replies

Just feeling sorry for myself really to be honest.

With a TSH increase from 3.7 (was higher previously) to 4.7 and a T4 of 10.5 at last check about 12 months ago. I am now told I am low in oestrogen and THAT's why I feel like I do. So I now have it on my records that I am 'pre-menopausal.' With HypoT being 'within the range' and therefor will not be considered or pursued.

I still don't feel well from my first consultation 2 years ago and have fought since. Now he says I am this. I don't have any choice but to accept, as this is now his justification for not referring me to an Endo. I have egg on my face not him.

It still doesn't sit right with me though; and I don't think I'm in 'denial' as suggested. I know some symptoms can be similar as they are with many other conditions, they've tried labeling me with me with Depression, CFSyndrome, Fibromyalgia unsuccessfully, and I have yet to experience a hot flush! I would quite like one every now and then to heat me up!

He's sent me away to consider combined HRT. Haven't a clue what to do now. Try it for 6 months? Most Endo's only work off referrals.

Off for lunch now and some shopping - that might help. :( Told you I was feeling sorry for myself. ;)

*** Just found this through an NHS site;

""It is a common myth that patients have the right to be referred to a Consultant if they feel their condition warrants it. However it is down to your GP to make the decision whether to refer or not, dependant on your clinical need.""

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36 Replies
PaulB profile image
PaulB

Know I wouldn't feel well at a TSH of 4.7. I need to be well below 1 or I feel awful.

All part of how different patients are a bow narrow the therapeutic range of Levothyroxin is.

Seems a constant battle if wits

Paul

PoppyRose profile image
PoppyRose in reply toPaulB

Hello Paul,

Thanks for your comment. I did ask again about me possibly feeling much better (like in the good old days) on a TSH of 2 or less AND, could we work towards achieving that but he's adamant it's not my Hypo T symptoms causing it. ??

PoppyRose profile image
PoppyRose in reply toPaulB

...also he's actually not giving me the opportunity to try to achieve a 2 or less - so even I won't know. That's why I'm still not settled with his recent diagnosis. I'm not denying there might be elements but not in the way I am feeling.

greygoose profile image
greygoose

Poppyrose, you don't give us any ranges, so it's difficult to tell how bad your labs are. Although that TSH is way too high, given that a euthyroid TSH is 1.25 - the ranges are just too vast!

No, you don't have egg on your face, it's your doctor that doesn't know what he's talking about. Did he give you the actual numbers for the oestrogen? I bet he didn't! Ask for them.

As I've said before, I am constantly amazed at the lengths some GPs will go to rather than admit to a possible hypo problem!!! It seems to be almost a point of honour for them!

Oh, you didn't say, are you already on thyroxine, or not?

Hugs, Grey

greygoose profile image
greygoose in reply togreygoose

Just wanted to say, stick to your guns, have the courage of your convictions, you know your body better than he does. Don't accept his opinions - because that is what they are, he has no real hard and fast proof. Any chance of changing doctors?

PoppyRose profile image
PoppyRose in reply togreygoose

Hello.

Yes feel free to read my profile for my history. I was on 75 mcg 2 years ago when first told I had Hypo T, soon they reduced to 50mcg, I felt jsut the same but at the appointment time I had little joint pain. The ranges have always been (0.3 - 5.5 or 6).

Your right! He didn't give me the numbers I wasn't sure what to ask for and must admit went blank. They are really reluctant to disclose - as if I'm asking for HIS details. Even though I have had to put it in writing that I'd like any results printing off - they don't.

Thanks for replying. I'm frightened of trying HRT if things don't get better (he says they will). Worried about the side effects too.

PR

greygoose profile image
greygoose in reply toPoppyRose

Well, you're not obliged to take the HRT. You have the right to refuse. Personally, I wouldn't take it myself, but I would advise you to read up as much as you can on it and make your own decision. Don't let them bully you into doing what you don't want to do.

Actually, it was the range for the T4 that interested me, the TSH range is meaningless anyway. TSH is pretty meaningless!

50 mcg is a very low dose. It's actually a starter dose, high enough to stop any production the thyroid might still be capable of, but not enough to make you feel better. You really do need an increase, I would think - or a new doctor!

Hugs, Grey

PoppyRose profile image
PoppyRose in reply togreygoose

Thank you! x

Yes I understand the irrelevance of the TSH. Yet it is the only result they will look at.

Hugs always accepted. :)

Will try looking from the list I was sent if there is a private GP that will test and examine more closely - without the constricting lab guidelines... and ask about the oestrogen.

PoppyRose profile image
PoppyRose in reply togreygoose

Please see my response to Shaws below.

PR x

PinkNinja profile image
PinkNinja

In some countries you would be considered hypothyroid. In fact, years ago, you would have been in this country. You symptoms could very well be because you are hypothyroid. Hypothyroidism can really mess with hormones and put people into early menopause.

I agree with greygoose; changing doctors might be a good idea.

PoppyRose profile image
PoppyRose in reply toPinkNinja

Hello Carolyn,

Yes I am Hypothyroid for 2 years now but have never felt the benefit of Thyroxine, started with 75mcg then they dropped it to 50mcg. ? The nurse that reduced my meds has been off sick for such a long time - so continued to research and seek help from GPs but I have ended up in this position!!

Yes I also read about the early menopause but I can confidently say that I feel the same (dreadful) as when they told me I was Hypo T 2 years ago. I still believe it's not resolved.

Perhaps will consider changing GPs. But as Gregoose says I could do with knowing the level of Oestrogen.

Regards,

PR

HarmonyAngel profile image
HarmonyAngel

Have you been checked for antibodies? If not you definitely should plus you need a more recent thyroid test than 12 month's ago. Although I'm still learning a lot myself I do understand that if your thyroid was ok then your TSH would be around 1.25 & your T4 & T3 would be in the top 1/3 of their ranges. GP's seem to think that as long as a result says "within range" then all is fine even when it isn't!! If there's not a different GP in the practice that you get on well with then I'd seriously consider changing practice's.

PoppyRose profile image
PoppyRose in reply toHarmonyAngel

Hello there,

Yes I've learnt so much too in just the past 3 months thanks to this site and the wonderful people.

Yes antibodies checked and thyroid done at regular intervals. Hypothyroidism confirmed - and nodules on thyroid (benign) that still bother me, but it's these blooming RANGES that GPs are sticking too!

Because my TSH has been withing the 'range' for some time (averaging 4.7 - 5.5) they don't test T4 (which was 10.5 (10.00 - 25.00) 12 months ago until my TSH hits 6 again! (0.30 - 6.00). Labs don't examine further if a TSH that is 'withing the range.' and they do not expect GPs to be asking for it either.

So it's far easier to suggest any other condition rather than listening to me. I get it - but NOT happy with it.

Thanks for you comments. Will prob consider changing practice. Need my oestrogen level first - if they'll tell me. lol.

PR

HarmonyAngel profile image
HarmonyAngel in reply toPoppyRose

Hi again

I'm lucky to have good GP's (though my main one has recently left to take a year out of General Practice as she said she's so fed up with all the politics & changes that are pretty much preventing her from doing her job & putting patients at risk).

I'm in Derbyshire & like you mention, only if your TSH is out of range (0.3 - 5.5 here) that they'll routinely run T4 but thankfully apart from the one test where I didn't know this, by asking my GP to specifically request it, it's been checked. However, as you have antibodies & likely therefore "Hashimoto Disease" then your GP *should* know that that means at the very least your TSH will be all over the place at least until your medication gets you to optimum levels & 50 mcg of Levo quite obviously is no where near enough for you & I don't understand why a nurse is in charge of your doseage (unless I read that wrong?).

I'd almost be tempted to print off some info or even write a letter & drop off/post to your GP because as it stands they're more than failing you as a patient!! As for your oestrogen level, as with any of your medical records they can't refuse to give them to you. As I understand it thyroid problems can cause havoc with other hormones so depending on your age etc. etc. it could be that those results are skewed.

I really hope your GP will start listening to you soon x

PoppyRose profile image
PoppyRose in reply toHarmonyAngel

Please see my response to Shaws below.

PR x

PoppyRose profile image
PoppyRose in reply toHarmonyAngel

Hi, thanks there's been no mention of Hashimoto's Disease. Have been researching this too. Not sure why they wouldn't tell me about that one. ??

Can change GPs but don't know how to find one that has an idea about the importance of lowering TSH and raising T4.

Could end up worse.

PR

PoppyRose profile image
PoppyRose in reply toHarmonyAngel

Hello, Just checked my antibodies it was at 720 April 2011.

shaws profile image
shawsAdministrator

Dr Lowe has said that undertreated hypo can cause more serious problems and that 'replacement' (keeping the TSH within normal range) is wrong.

This is an excerpt re low dose

Dr. Lowe: First let me say that what you experienced is fairly common. Many patients react to low-dose T4-replacement as you did—badly—regardless of the brand of T4.

Cursor down to April 22, 2007

There are two potential sources I know of for people feeling awful when they are on T4-replacement. One source is the extremely low dosage that doctors typically prescribe nowadays. A low dose of T4 can effectively reduce TSH secretion. The lower TSH can in turn lower the thyroid gland’s output of thyroid hormone. At the same time, low-dose T4 may not compensate for the thyroid gland’s reduced output of thyroid hormone. The patient then has too little thyroid hormone to properly regulate the metabolism of most of her body’s tissues. She then ends up with abnormally low metabolism and troubling hypothyroid symptoms. I’ve written about this before on drlowe.com.

The second possible reason for your bad reaction to Synthroid is that T4-replacement simply won’t work for you. It doesn’t work for many hypothyroid patients. In a recent study in the United Kingdom, for example, T4-replacement left 50% of patient suffering from hypothyroid symptoms (Saravanan, P., Chau, W.F., Roberts, N., et al.: Psychological well-being in patients on ‘adequate doses of L-thyroxine: results of a large, controlled community-based questionnaire study. Clin. Endocrinol. (Oxf.), 57(5):577-585, 2002.) Unfortunately, through faulty reasoning, these researchers concluded that a much smaller percentage of patients suffered from symptoms despite being on T4-replacement. They are mistaken about the percentage. The evidence is overwhelming that T4-replacement is the lousiest approach to thyroid hormone therapy. I’ve documented the widespread failures of the approach in two critiques

web.archive.org/web/2010122...

Dr Toft ex President of the British thyroid Association says the following - (if you need a copy of this article you have to email Louise.Warvill@Thyroiduk.org)

6 What is the correct dose of thyroxine and is there any rationale for adding in tri-iodothyronine?

The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range – 0.2-0.5mU/l.

In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l. Most patients will feel well in that circumstance.

But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.

PoppyRose profile image
PoppyRose in reply toshaws

Thanks Shaws for the above. Any comments please?

I have been researching all day and came across these which are more specific to my issue.

"Women who are undergoing Hormone Replacement Therapy (HRT) or taking the contraceptive pill may need a higher dose of thyroxine sodium, and conversely a reduction when HRT is discontinued. ***This is because increased oestrogen levels decrease the uptake of thyroxine by the body.***

southerncross.co.nz/AboutTh...

I have a big problem with the first reference as my GP will not raise my Thyroxine anyway because I am 'within range'. Because my Oestrogen is low (don't know figures) and he wants to raise it, I asked if it was safe with Thyroxine and he said yes of course; BUT l he didn't mention raising the Thyroxine to compensate!! So I could end up even worse with lower thyroxine. If I understand this correctly.

Therefore alternating from one condition to another (I don't think it is the change making me feel so bad).

This is about women and low thyroid or no treatment.

"Women in this frustrating circumstance are often told "It's just your menopause," as if they should expect to feel awful for years because of a natural reduction in estrogen. Without an accurate diagnosis of low thyroid, these women are simply given estrogen and their symptoms linger."

thyroid.about.com/cs/shames...

Anyone any views?

By the way I still have monthly cycle (no changes) and I am taking contraception (49 yrs old).

PR

shaws profile image
shawsAdministrator in reply toPoppyRose

I do hope someone will be able to answer your questions. I am not medically qualified but know that T3 is needed in every single cell (of which we have billions and the brain contains the most). If you are low, nothing works properly and undertreatment can cause other problems which are treated as separate conditions.

It would appear to me that due to the modern way of diagnosing thyroid gland problems is by the use of the TSH alone. I doubt if many doctors know about clinical symptoms and people continue to suffer. They have to comply with the guidelines which keep many of us continually unwell or lead to other conditions. some may be labelled hypochondriacs

Is it possible for you to have a private consultation with someone on Thyroiduk.org list of doctors? If so if you email Louise.Warvill@Thyroiduk.org. Or if someone has seen a good Endo maybe put a new question asking if they coud private message you.

PoppyRose profile image
PoppyRose in reply toshaws

You do have a lot of knowledge though and that is very helpful so thank you.

Yes I agree with your comments on the modern way of diagnosing - poor isn't it?

I have already posted some time ago for recommendations for an Endo but there was little response.

I have spent a lot of time today once again with the list you mention and all need a referral from the GP. Whether private or through insurance. I can change GPs but how do you know what their views are and how far their prepared to work with you rather than against?

I also spoke to BUPA today and they stated that if I put in a claim with them they automatically put the request for referral in and it can not be refused (no request for referral should I understand). They were very helpful, but my insurance company needs the request agreed via the patient liaising with the GP. Perhaps I will speak to them again.

The problem in this country are the guidelines and the blooming 'ranges.' It is stated in one document I read that the ranges should be taken in consideration with the patient's symptoms - but this doesn't happen in my practice.

Thanks for all the comments it does make interesting reading, an ammunition should I need it. ;)

PR

Lifeback profile image
Lifeback

HI poppyrose years ago I was diagnosed with fibromyalgia but I wasn't getting better I was convinced I had lupus I still don't know if I have my gp wouldn't listen to me and told me to go away for a year I was not pleased so I went on internet and found a lupus docter wrote to them and they suggested I have a skin biopsy it was a dermatologist that took my blood and found I had hasimotos. If I were you I would find an endo on internet and write them a letter tell them everything that you are experiencing my endo is very good good luck x

PoppyRose profile image
PoppyRose in reply toLifeback

Hello Lifeback and thanks for your comments.

*** Just found this through an NHS site;

""It is a common myth that patients have the right to be referred to a Consultant if they feel their condition warrants it. However it is down to your GP to make the decision whether to refer or not, dependant on your clinical need.""

I can't get into an Endo - they all need GP referrals, even though I'm paying privately. My GP won't refer. I'm stuck! I've spent all day looking into Oestrogen/Thyroxine/ Symptoms and private GP/Endo's... and still at it as you can see from the time.

PRx

Lifeback profile image
Lifeback

Hi poppyrose just found a site on google input.me.UK/ NHS constitutions where it says you have a right to a second opinion just thought it might help x

PoppyRose profile image
PoppyRose

Hi and thank you so much for this link. I'm wading my way through it now. I'm not sure how 'closed' rank' my surgery are and another GP may possibly give me the same diagnosis. I won't know unless I try I suppose. I couldalways speak to the Practice Manager and ask her advice. ??

I've read this weekend of some one doing just that and the original GP removed the patient due to 'a breakdown in relationship'. Apparently they don't have to give reasons why either. So I need to tread carefully.

I have emailed this weekend a private in Harley St. I might be fleeced financially if they accept me but I just need someone who will look at lowering TSH and raising the freeT4 without a GP referral. I'd rather this than taking HRT without resolving the first complaints.

Thanks again.

PR x

Lifeback profile image
Lifeback

Hi poppyrose have you heard anything yet think its terrible that we have to pay to get anything done thought thats what these gps get paid so much money. i refuse to see mine now ask for another docter when i phone the surgery i find the new ones are the best mine is a teaching practise so all new docters have to do a stint there they have all the latest info xx

PoppyRose profile image
PoppyRose in reply toLifeback

Hi!

Yes they referred me to one in Hale who will see me without referral. Hope that's legal. Looking into it. She does thorough profile testing, and analysis and has apparently turned around many women diagnosed with perimenopausal/change when in fact it was the thyroid or poor understanding of medication. The nurse receptionist knew exactly what I was talking about and practically told me why I was calling them!! £245 for 50 mins!! :( plus tests and subsequent appointments.

Hubby's cross now as to why he's paying private insurance and I can't claim! Just cancelled the appointment (delayed really) of next Wednesday - how close was I??

Need to go back to Gp now and tell him I'm not happy at this stage to take HRT (but will be blooming ready for it by the time anything is sorted!) and ask for that referral again. He's adamant it the change now!! Oh I feel sick!!!!!!!!

Why oh why do I go to pot in just 1 minute with the GP's in a 10 minute appointment, yet battle and survive teaching teenagers for years?!

Yes we could do with some new blood. Ooops pardon the pun!! Only two permanent GP's the rest are quick staff turnover, or useless locum.

Thanks for asking. ;)

xx

in reply toPoppyRose

I think it's perfectly fine to see a private doc without a referral - legally I mean. If we were all minted surely we would all be doing it! ;-)

Louise

x

PoppyRose profile image
PoppyRose in reply to

Ha ha I wish! I certianly woudn't have allowed being fobbed off for this length of time (short compared to some experiences I know).

And yes thanks. :)

PRx

Lifeback profile image
Lifeback

Hi poppyrose when you go back to docters give them what for i like you have been backwards and forwards for years my menopause supposedlly started when i was 42 think it was thyroid i am now 50 did you know that menopause can cause thyroid and thyroid can cause

menopause your docter should knows this i think you have to lose your temper a bit then they seem to sit up and listen try it got nothing to lose. best wishes let me know how it goes x

PoppyRose profile image
PoppyRose in reply toLifeback

Hello again! So we are the same age'ish! got another 3 weeks before I hit the special day, got a month of weekends planned to celebrate too. That is after cancelling any original celebratory ideas. Done it for the children because they're fed up with me being upset about my health. SO 'another' face to paint on this month. ;)

Yes I have read about the points you mention and I did ask about it too, just like I asked about HRT inhibiting the TSH and he says not. THAT'S the main reason for me not wanting to take it. I daren't in case it gets worse.

I'll let you know - got a busy week at work so will crack on after that.

PRx

will p.m you

tulula59 profile image
tulula59

Ah ha! That old chestnut the menopause. As far as I'm aware all woment go throgh ti at some point or another! Yep, me too, all this stuff and nonsense began at age 46 all the hypo symptoms that is. Yep, night sweats and daily hot flushes too.

I refused HRT for several reasons and do NOT accept that the way I feel is much to so with th emenopause itself. Nature surely would n't have created a system where as one hormone goes down (gradually over many years) all the others just take their leave automatically. The world owuld cease to fiunction completely.

No, maybe it hasn't helped things along but the fact that I'm still in pain, so cold, tired, bald bloated and menstruating (albeit irregularly) at 54, 8 years later means something else is afoot!

The shocker from my old GP when I explained how dreadful I was feeling with all the above plus much more was, 'Here's HRT - you're obviously not coping with the transition'.

That said if someone were to say to me, 'Just two more years and it aill all be over and you'll feel just like your old self once again' then maybe I could stomach it. As it is they just sit there now looking at me weird and say 'there is nothing more I can do'. When in fact all they have done is gone 'by the book' and tha'ts not exactly hard!

No, I'm gonna fight onwards and upwards - whatever it takes.

So, poppyrose - keep your head up - something's gotta give eventually!

PoppyRose profile image
PoppyRose in reply totulula59

Aw thanks for that!! You have no idea what a difference you have made to my c**p day (sorry). For some reason I have been so down, lost all confidence in myself, couldn't even hold a conversation with staff at lunch time without feeling so uncomfortable like all eyes were on me. Odd.

Yet yesterday I had a successful meeting with the surgery where they have finally agreed to either alter medication or refer me. A battle for a couple of years. Sticking to 'the range' makes you ILL!

I have never had a hot sweat,n ight sweats, hot flush, a flash or whatever else you want to call it. My symptoms has not changed since THEY told ME I was HypoT.

Yesterday I dug out the one set of detailed results I have from last year and checked to see if a FSH was on it. YES!! my FSH was 'normal' at 3.9. (1-11) This year it's 4.3 (1-11) yet I feel no different. and now they tell me I'm low and it menopausal. Why not last year??

HRT is just a cop out for not analysing further.

I simply told them their service has become a farce!!

Like I said by the time they do anything I will be in the midst of a full on menopause and THEN they will say 'told you so' Argh!

Thank you for your words of support.

PRx

PoppyRose profile image
PoppyRose in reply totulula59

Oh and by the way (how selfish) good luck with your lot, they're really putting you through it aren't they?

Keep me posted.

xx

tulula59 profile image
tulula59

Hi there

Menopause or not (and clearly am by now) I have now completed a private blood test via Genova and am awaiting results. I'll try and remember to post them here when they are back in about 10 days.

I won't have it I'm afraid.

Yes, I expect to feel a bit different, a bit mood swingy, a bit stiffer and older but what has happened is that I've become violently ill on gluten, have tendonitis at at least 4 joints, severe core weakness despite daily Pilates, muscle knots that kill all over, a heavily swollen tongue, lost eye-brows, constantly cold, hair fallen out badly so had to have it all cut off etc etc and it's just gone on and on and on now for 7 years.

I did manange to get GP to test for FT3 and TPO Ab anti bodies by aksing for them and stupidly said that if they were all clear then I'd shut-up about it all. Anti-bodies was negative (although they don't always show up apparently- so that's helpful) and the FT3 came back as too high. The endo my GP spoke to then said that as I had so much FT3 I should feel wonderful and it must be the menopause or my hypermobility !!!!!!!

The private bloods will tell me whether the other anit body TgAb that is involved is up or not and what the state of play is with reverse t3 in case I'm not able to use the t3 I do have. There's loads of info out there about how a failing thyroid will gradually push up TSH, lower t4 and elevate t3 in a bid to compensate so what do we do?

Wait until we are so far off the scale that we cannot function at all?

Oh - this is so frustrating. I know lots of woment who are sailing through the menopause (mostly) and just feeling a bit under the weather not in constant muscular pain and not alarmed by their body's changes.

It sucks - the whole lot of it.

P.S. Your anti-bodies at 720 very much indicates Hashis I would think as the cut off on my was anything over 70! - why hasn't anyone spoken to you about that!

Gggrrrr .... I'm so cross for you!

PoppyRose profile image
PoppyRose

Obviously very similar treatment (not) but different symptoms/concerns. Doesn't all this gt you down??!! GP keep telling me to cut down stress in my life etc.....!

Good luck with the bloods, I considered that just before I had this appointment for Monday so will hold out to see if they do something or refer me through the insurance.

I agree - I told the PM that if my bloods TSH went any higher and the surgery has ignored my requests for treatment for so long I will take further actions!! Hence this next appointment.

When I posted my results on here (the original set) so many people commented about Hashimoto's and I had never heard of it, still a bit confused because people have identified and pointed it out with urgency but NOT the GP? So where then does it fall in the line of importance of treating? Minor? major? Immediate? etc... and the fact that I have been making my treatment complaint for some time. ??

Even worse when all comments on here contradicted with the idea that my GP had chose NOT to tell me, and I just couldn't believe that a GP wouldn't mention it. !!!

Still confused so it's on my list for Monday to ask. and still re-reading comments made and explanations.

REALLY annoyed about that one!!

Good luck and keep me posted on you results - hope you get somewhere!

PR

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