Saw consultant endo this morning. Main symptoms are fatigue, lethargy (can't stand or walk for long) and shortness of breath, feeling like I'm suffocating. Had convinced myself that it's was caused by Hashi's but he dismissed this, even though I have a family history of under active thyroid.
As my FSH is elevated, he believes that my hormone level is causing my symptoms, stating that my oestrogen level is rock bottom.
Question 1 - how are oestrogen levels recorded in UK? I can't see anything on my blood test results that are hormone related, only the FSH. Perhaps my print out from my surgery missed off this section?
Question 2 - he recommends HRT, would these help my symptoms? Due to the lethargy and shortness of breath, I have had to give up work and volunteering.
Question 3 - could my symptoms still be caused by hashi's?
I wanted to discuss TSH ranges in UK compared to other countries. He said our ranges are different due to different machines but results are relative, so would be comparable in other countries. They are merely recorded with different ranges due to different machines, if that makes sense.
To be fair to him, some my symptoms did start or become worse around the time that my periods stopped, nearly 3 years ago so that is why he believes it is hormonal. He has recommended HRT. I asked if this would sort out my shortness of breath, he said it could. I don't have night sweats or hot flushes. I'm hesitant to start HRT as my mum had breast cancer. He advised no longer than 5 years because of this.
I looked up earlier if low oestrogen can cause breathing problems but could only find reference to both progesterone and thyroxine improving respiration. Has anyone had experience of HRT making breathing worse? I found one site that mentioned increased breathing problems with hormone therapy.
It's good news in some ways that finally a doctor has found something in my blood results. My GP had literally said that I am going through the menopause and asked if I was having night sweats. As I wasn't, he didn't treat or suggest anything.
I'd appreciate any advice that anyone can give me. I so want to get back to work and to be able to do simple daily activities without struggling. Whenever I do anything that needs energy, I feel slightly nauseous and have that feeling like when you've been running and have run out of oomph
I've previously posted in both this site and PAS. My full results are in previous posts.
Thank you.
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Highland49
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Hmmm, sounds like he's saying it's the menopause too... Low oestrogen? Don't know how it shows on nhs bloods, shows as oestrogen on private bloods 😉 In many other countries your ever increasing TSH would be diagnosed as Hypothyroidism when over 3 repeatedly... With positive antibodies you do have Hashimotos, he did at least agree with that yes? ALL the symptoms you listed scream low thyroid hormones to me for sure as do your bloods.. Read the list of 'some' symptoms on Thyroid UK site,
Sorry right brain not helping me today. There is an article by Dr Toft basically saying if positive antibodies then he recommends trial of levo even if TSH is still 'in range'. Hopefully someone with a working brain will be along soon.
My opinion is no to HRT by the way, I use Serenity bioidentical hormone cream by Wellsprings.
When I said to him"don't raised antibodies point towards Hashimoto's?" He replied that my thyroid function from the other results show that my thyroid is not struggling. Then lots of discussion and emphasis on the TSH.
He was very convincing about the hormone/menopausal diagnosis but it wasn't until after when I thought how does he know my hormone level, he only knows FSH level? I don't have night sweats, hot flushes or weepiness, just lots of irritability! So surely he is trying to treat me for something without fully knowing my hormone levels and without all the usual symptoms being there.
I thought by going down the route of having my full thyroid panel done would eliminate all this faffing about as he would have all the information in front of him plus me telling him my symptoms. But alas, not to be.
The word 'battle' made me laugh but unfortunately many doctors refuse to vary from the guidelines. Why are they called guidelines when they cannot guide us to be symptom-free?
I've just had a whinge to your other reply! Waste of time seeing my GP. Yes, she didn't want to vary away from the TSH guidelines or go over the head of the endo 😬
The article by Dr Toft that fibrolinda mentions is the Pulse article that you can obtain from Dionne at tukadmin@thyroiduk.org
I believe it is Question 2 that mentions that if antibodies are present then starting Levo can "nip things in the bud".
And I am on the same page as Fibrolinda about HRT. Personal choice obviously, but it's not something I would have considered. I am way past menopause but use Elan Organics Bioidentical Progesterone Cream.
I'll email in a mo. Dionne was very helpful in emailing me the recommended list for the endos. I will update her that this consultant was from the approved list and let her know that my visit was not useful. It doesn't mean to say that he wouldn't be helpful with someone who has already received a diagnosis but he did place far too much emphasis on the TSH.
What your doctor said about ranges in other countries and their machines, is only part of the truth. That applies to FT4 and FT3, certainly. You can only interpret the results using the range from the laboratory that did test. But, what he failed to mention is that a TSH is always a TSH. The range is just a way of getting out of diagnosing hypothyroidism in some countries - the UK doesn't even bother to respect the range and wants to wait until the TSH is over 10! That's just on of they nasty littlie money-pinching measures. However, you will always be hypo when your TSH hits 3, no matter what the range. He was probably just BSing you, there.
I think when you're there, they're very convincing and unfortunately my husband was very reassured that according to the consultant it's not thyroid but a hormonal problem so now is "why don't you believe him?" I really don't know where to go from here as this consultant will now update my GP and state that I should now be prescribed HRT, which I can refuse of course. Do you know of any consultants in the south east that are more knowledgable of hashi's? I think on the main Thyroid Uk site there are links of companies to obtain thyroid medication from but at the same time, I would hesitate as where do I start, if I need T3 with T4, just T4 or NDT? My day has not gone how I hoped it would!
I don't know any consultants whatsoever in the UK, I don't live there.
With all hormones, you start low and increase slowly, that is the rule. That means that with levo, you start on 50 mcg and increase by 25 mcg every 6 weeks after retesting. It's usual to start on levo, because that gives you a good idea how you react and how well you convert. Once you've got your TSH down to one, you can decide how to proceed based on how well you've done on levo. It isn't really all that complicated. But, before attempting anything, you do need to get your nutrients tested - vit D, vit B12, folate and ferritin - and if low supplement them to optimal levels. They need to be optimal so that your body can use thyroid hormone correctly.
Oh yes sorry, I was forgetting that thyroid is still hormone related. I even mentioned to him about the optimum TSH being around 1. He replied to say that in his experience with thousands of patients that one might not be ideal for them.
I've just had my nutrients retested with the thyroid tests, ferritin better at 71, vitamin d now 61 nmol, folate 24.6 and SI b12 alternate days. Have just gone gluten, dairy and soy free to help symptoms.
Oh, they all say that! Sometimes I discuss it with them, calling their bluff, but mostly, these days, I can't be bothered. They wouldn't have the first idea if their patients were optimal! And, actually, I think you'll find that the majority of hypo patients need their TSH under 1.
So, your ferritin and, vit D are still too low.
You don't have to have a prescription to buy T4 on-line.
I wonder how they can diagnose menopause and prescribe HRT without proof we need it but ignore the proof we have UAT / Hashimotos. It’s almost like they don’t want us to feel better......
Absolutely. If I had night sweats, headaches, hot flushes and depression I might consider it but I just think it will put me months behind in my recovery. I think my opening question to my gp will be "what symptoms would you need to be present before you would prescribe hrt?"
I really need to get back to work as my husband has been made redundant and this stress cannot be helping.
Before I became hypothyroid I thought most doctors knew everything about common illnessses. I had no knowledge of hypo before I diagnosed myself despite umpteen visits to various doctors before that.
Husbands or even good friends are horrified when we say that I am feeling even worse and I think I will search the internet.
I believe our instinct works well so we should listen to it at times. We expect to be given a diagnosis and a prescription but if what they prescribe isn't working, they should look at us with new eyes or refer us. Many members are told they are 'depressed' have aches/pains, fatigue etc etc but will be given separate prescriptions whereas with hypo we need one which covers all of the many symptoms but we do need a dose of thyroid hormones (gradually increased) until we are symptom-free and feel well.
Yes couldn't agree more. I'm still waiting for that Holy Grail of a presciption of thyroxine. Even though I have positive TPOs, family history (aunt and grandmother) and symptoms which GP considered too generic, I have been refused treatment and have actually conceded to the HRT. I then asked if the HRT doesn't improve my symptoms and the chest clinic that they referred me to doesn't find anything, would she prescribe thyroxine then? You can guess the answer. So after explaining to her how my suffocation feeling has come about and trying to refer to studies and reports, I'm no nearer forward.
My mind works by finding out why something is happening so I educated myself about slow metabolism caused by hypothyroidism. Respiratory muscle strength is reduced, caused by both myopathy (muscles) and neuropathy (nerves). The body then consumes less oxygen due to less thyroid hormones. Less oxygen plus over production of lactic acid causes oxygen deprivation, even when adequate oxygen is available.
Explaining that I feel like I'm running for a bus all the time, with the struggling to breathe, aching legs and build up of sensation in throat and chest didn't make any difference to her decision; she would not and could not go over the head of the consultant's decision.
So HRT for 3 weeks and await chest clinic. I then asked her what the treatment is if the clinic finds "dysfunctional respiration" - PHYSIO!!!!
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question to those who chew Thyroid-S up
Does DHEA balance your hormones? Have you used DHEA? Has anyone had a NHS test for DHEA levels?
Levo and mirtazepine together?
