Here I go again?: Hi,Sixty-two year old female... - Thyroid UK

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Here I go again?

liauq profile image
28 Replies

Hi,Sixty-two year old female.

Had classic symptoms of hyperthyroidism nearly twenty years ago and a few months of tablets put me right.

I've been suspecting that it's come back for a few years: night sweats, thirst, hair loss, memory loss, tired, poor sleep etcetera but all the blood tests were negative and I feel I been diagnosed with "sad old post menopause female" syndrome.

Recently noticed intermittent double vision and went to the eye hospital: got a "prism" and a blood test result for TSH of 0.026 which they are going to refer to my GP. The eye hospital are also going to monitor my vision every few months.

Would like to know if anyone with hyperthyroidism gets the following:

A really itchy raised red rash on their neck, aggravated by heat of sunlight? Dreading summer.

A cough/post nasal drip/bunged up ears and hacking up for foamy mucus? My GP suspects GERD but I get it every February to April and no other time.

Thankyou.

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liauq
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SlowDragon profile image
SlowDragonAdministrator

night sweats, thirst, hair loss, memory loss, tired, poor sleep

Common symptoms of being HYPOthyroid

Did you mean hypo or hyper

But also frequently linked to low vitamin levels……very common with thyroid disease

Hair loss - low iron/ ferritin

Night sweats - low B12

Please add actual results and ranges of tests done

 

For full Thyroid evaluation you need TSH, FT4 and FT3 tested 

Also both TPO and TG thyroid antibodies tested at least once 

Very important to test vitamin D, folate, ferritin and B12 at least once year minimum

About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high thyroid antibodies 

Autoimmune thyroid disease with goitre is Hashimoto’s

Autoimmune thyroid disease without goitre is Ord’s thyroiditis. 

Both are autoimmune and generally called Hashimoto’s.

Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease (Hashimoto’s or Ord’s thyroiditis)

20% of autoimmune thyroid patients never have high thyroid antibodies and ultrasound scan of thyroid can get diagnosis 

In U.K. medics hardly ever refer to autoimmune thyroid disease as Hashimoto’s (or Ord’s thyroiditis)

Recommended that all thyroid blood tests early morning, ideally just before 9am

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)

Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins

List of private testing options and money off codes

thyroiduk.org/getting-a-dia...

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins

bluehorizonbloodtests.co.uk...

Only do private testing early Monday or Tuesday morning. 

Link about thyroid blood tests

thyroiduk.org/getting-a-dia...

Link about Hashimoto’s

thyroiduk.org/hypothyroid-b...

Symptoms of hypothyroidism 

thyroiduk.org/wp-content/up...

liauq profile image
liauq in reply to SlowDragon

Many thanks for the information. The eye hospital did a barrage of tests including b12 and ferrying and everything came back ok apart from TSH at 0.026 and something about white blood cells (they weren't clear on that) so they suggested hyperthyroidism was a possibility. The tests were done at 9.30 a.m. and on fasting.

I've sent off for a test to get TSH, free T4 and free T3 measures.

The next challenge will be to get a GO appointment!

SlowDragon profile image
SlowDragonAdministrator in reply to liauq

what are the actual results and ranges for B12, folate, ferritin and Vitamin D

Within range is not necessarily optimal

NHS only tests and treats vitamin deficiencies

Looking for GOOD levels

Serum B12 at least over 500

Active B12 at least over 70

Vitamin D over 80nmol

Folate and ferritin at least half way through range

SlowDragon profile image
SlowDragonAdministrator in reply to liauq

You need thyroid antibodies tested

TPO or TG antibodies for Hashimoto’s or Graves’ disease

TSI or Trab for Graves’ disease

Hashimoto’s frequently starts with transient hyperthyroid results and symptoms before becoming increasingly hypothyroid as thyroid breaks down and stops working

Thyroid eye disease (TED) can occur with Hashimoto’s as well as Graves’ disease

liauq profile image
liauq in reply to SlowDragon

Unfortunately the hospital have only given me the bare details, but you are right, I'd love to see the full details too. I'll try to get them.I have been diagnosed with Vitamin D deficiency previously but that was a "buy some tablets and get on with it"job.

I feel as though no one is able to step back and see the whole picture: they are focused on one little bit and if you don't get an obvious blood test , forget it!I

I've told doctors that I've had thyroid problems before and that my mother and sister (nodules) had overactive thyroids whilst another sister has borderline interactive thyroid but the endocrinologist at that time was very dismissive.

I suppose that I've been waiting for the "obvious" symptom and the double vision finally made someone do something but I know it's going to be a struggle with the medical profession!

What you are saying makes a lot of sense to me because I do not have the jittery, shaky, "over-reved" feeling I had before, it's calmer and I feel both hot and cold as though my thermostat is just broken.The inability to say and sleep is similar, though.It's like a "pick and mix" of symptoms.

I'll give all your information a good read and get some more tests if needed as we have to be out own advocates, don't we...first time, the GP asked me if I was depressed and tried to fob me off with anti-depressants, he was well chuffed when his "thyroid" second guess was right!

Rollercoaster44 profile image
Rollercoaster44

slightly off the wall question….but do you live in the countryside and/or near freshwater by any chance? Just aware from my earlier days working in countryside management that many of us had bad hayfever feb to april time and it was often down to tree pollen….hazel, yew, willow and alder…….just a thought.

liauq profile image
liauq in reply to Rollercoaster44

Hi, no,I'm not a country girl, was thinking of something a bit more unglamerous like dust more allergy as a possibility though.

PurpleNails profile image
PurpleNailsAdministrator

When you were hyper previously was the cause ever investigated? 

A few months on antithyroid is extremely unusually.  

Transient hyper is common with autoimmune thyroiditis.  The immune systems attacks the thyroid the damage causes the hormone stores to release causing a temporary rise.  If the immune system continues to attack the damage results in hypothyroidism. 

The TSH is pituitary hormone which tell the thyroid to “increase production of hormone thyroid levels are low” (higher the TSH, stronger the signal)

If the TSH was a foolproof measure - low TSH such as yours - should mean the thyroid hormone (FT4 & FT3) are high. 

but - the TSH is *not* a reliable. If you previous had hyper & treatment then it’s possible the feedback loop is faulty or its off for another reason & you need FT4 & FT3 tested before anything can be decided treatment wise.  

My TSH stays low even when FT4 & FT3 drops very low.  

If you had a Graves diagnosis & this is a re-occurrence of it, then you eye issues could be related to it.  

TED (thyroid eye disease) can occur preceding, during or after being diagnosed but many report that their TED is worsened or triggered when levels are low or high or fluctuating.

Your GP or endocrinologist should refer you to a Opthamology specialist. I’ve found opticians helpful in writing letter to help arrange a referral. 

Do you struggle with heat many with hyper do & I definitely get more redness & itching when hyper.  

You might have an allergy as or not all year round.  Have you tried an anti histamine?   Feb - April is high for certain plant pollens.

liauq profile image
liauq in reply to PurpleNails

Hi, thanks for replying.

No, I was never investigated for a cause, just given tablets, which seemed to work quite well: this was nearly twenty years ago.Didn't have eye problems.

From my early forties, I've had recurring bouts of what I call my "mini flu's". They start with a bad headache/nausea and at night I get bad pain in my limbs so that I need to turn over in bed but feel too heavy to do so.I recover after with in 24 to 48 hours of doing nothing.

Had a bad time during menopause with sleeplessness, got sweats and memory loss and never been the same since.Just got fed up of going to the doctors.

It was the Optician that I saw because of double vision that referred me to the eye hospital where they did blood tests to see if it discussed by diabetes, vitamin/mineral deficiency, thyroid or autoimmune like MS or MG and they identified the low TSH, so it's Opthalmology to GP and then possibly Endocrinologist this time. Hope I get a better one this time!

I do struggle with heat:I've learned to dress in layers for when the flashes come and my neck seems to have a permanent rash waiting to erupt which is very painful but I also feel the cold easily and get "Raynards"(?) in my fingers.

Apart from that, I've been diagnosed with "Frontal Fibrosing Alopecia" which is an autoimmune problem where my body has decided that my hair is the enemy and is killing it around the hairline:when it's gone, it ain't coming back. Couple that with overall thinning (age or thyroid) and I'm not very amused!

Starmen profile image
Starmen

Hello LiauqThe symptoms you describe of itchy neck post nasal drip etc I also get . I have rhinitis so it's like hayfever all year round . I use Sterimar nasal spray (salt water no chemicals ) daily which helps .

Also I have noticed that the rash on my neck and sometimes other parts of my body seems to happen when I have too many foods with high histamine content. Hope this is helpful.

liauq profile image
liauq in reply to Starmen

Thanks: I'll check out high histamine foods. I've been using Sterimar, salt water gargles and a certain cough medicine but my GP is insistent in ruling out GERD before considering allergies.

Marz profile image
Marz in reply to Starmen

Colloidal Silver spray by Institut Katharos - on-line - has kept Rhinitis at bay for many months now. One spray into each nostril and 1/2 into the throat. I have been plagued for years. X-Clear nasal spray also taken before hitting the crowds. 🌻

Starmen profile image
Starmen in reply to Marz

👍

Marz profile image
Marz in reply to Starmen

Thank you !

liauq profile image
liauq in reply to Marz

Ta, will check them out.

TiggerMe profile image
TiggerMe

Have you tried HRT? I'd have thought that would be the first step, all the things you describe are attributable to low sex hormones

liauq profile image
liauq in reply to TiggerMe

Hi, Eeyore: sex, what's that?Did persuade my GP to let me try HRT about five years after I started the menopause because of bad symptoms and felt pretty good but then I had a really bad "turn" which affected me physically and mentally (my memory is total rubbish) and scared the hell out of me so I stopped taking it.I

In retrospect, the symptoms that I put down to menopause could have been my thyroid: night sweats, sleeplessness etc.

Not sure a GP should give you something like that and do no follow up or monitoring and it may not have been the HRT....

I'll best that in mind, though.Cheerd.

TiggerMe profile image
TiggerMe in reply to liauq

🤣 I found that my low thyroid levels meant all the other hormones crashed in sympathy or maybe it's the other way around??... I added Levo then HRT and then Lio to drag myself back to being vaguely donkey. Really hard to tell which low is the cause, when in fact it is all of them! Thankfully once menopause is dealt with you can have more control over your levels by adding in just what you need without it going haywire

Tried the mother (outlaw) on some oestrogel at 90.... vast improvement, no more 4am panic phone calls... though still a total nightmare 😬

HRT certainly shifted the awful anxiety and sleep issues, I can't tolerate high histamine foods either they are certain to bring on a massive crash.

Tightrope walkers whilst juggling are us 🤗

Litatamon profile image
Litatamon

Get your actual 'normal' b12 result. And do you already supplement b12? If you do ask your GP for your lowest b12 result on file. That is important, it is not low & now fine like most readings.

I had double vision before being diagnosed and treated for b12 deficiency (and vitamin d deficiency). I also had cognitive issues, including memory, hair loss, exhaustion and sleep issues.

Just make sure you do everything to simply cross if off as a possibility.

-------

With the thirst - Was your blood sugar checked?

All the best to you.

liauq profile image
liauq in reply to Litatamon

Many thanks..just reminded me to take my vitamin d tablet.Need to get my sticky pass on the results of get them done privately.

My blood sugar was tested. To be honest, it's quicker to say who hasn't had either Type 1 or Type 2 diabetes in my mother's side of the family. I tell the doctors but without a positive blood test they don't want to know. They look at me and because I'm thin, they instantly dismiss it because thin people don't get diabetes, right?

PurpleNails profile image
PurpleNailsAdministrator in reply to liauq

If like me you have a terrible memory and taking medication / supplements / hormone replacement is tricky…. There is a solution. 

It’s often important to take things at the right time to ensure they are spaced out and consistently taken. I now use a pill organiser you can also set alarms on your phone or use a pill reminder app.  

I choose an app which alarmed when pill were due & you had to tick off once taken.  You  got fun or interesting photo at end of day.   

I don’t use the app anymore, as memory better & in the habit of remembering.  

Weight can be misleading, I gained weight when hyper which isn’t the norm. Weight loss is common symptom prior to diagnosis of diabetes type 2.  I also gained weight prior to it being detected.  

liauq profile image
liauq in reply to PurpleNails

I'm a bit more old school, I leave jotted everywhere. To be honest, it's been so bad for so long that I don't worry about it anymore .😀

Litatamon profile image
Litatamon in reply to liauq

Sarcasm, I like it!

I have the opposite problem. I am overweight scale wise but not really that overfat at all. But everybody reads size as a one shot deal. Sometimes I am close to saying "Umm maybe you should just hug me". Laughing.

And in addition - and off topic to your reply -whoever named type I & type II the same thing should be posthumously spanked.

Hope you get some answers soon.

liauq profile image
liauq in reply to Litatamon

Ta! You too.

nightingale-56 profile image
nightingale-56

Your recent symptoms sound very much how I presented with B12 deficiency. I am now self-injecting every other day with B12 Hydroxocobalamin to great advantage. Also taking co-factor of B-Complex.

liauq profile image
liauq in reply to nightingale-56

That's interesting. I did try b12 tablets for quite a long time and it certainly didn't hurt but at the moment I'm going to keep everything minimal just to see what the medical profession come up with!

Litatamon profile image
Litatamon in reply to liauq

If you have an absorption issue other than diet or have Pernicious Anemia, the b12 pills might not make any difference with symptoms. Those of us with shots are told we absorb. 1 to 2 percent of the pills but not everyone feels any difference with them.

Unfortunately you can not rely on the medical community when there is a b12 deficiency or Pernicious Anemia. They are truly out to lunch with it all & do a ton of damage with their erroneous nonsense. It can cause serious issues from head to toe & be mistaken for a myriad of issues including Alzheimer's, MS, trigeminal neuralgia & mental illness.

Doctors only study vitamins for a half a day in medical school, I have been told.

Also there is something called Functional b12 deficiency as well where levels in the blood are fine, but it is not going where it needs to go in the body.

I will come back and link some concise reading when I get a chance. Once again just to make sure you can cross it off as a possibility.

liauq Some great concise reads -

stichtingb12tekort.nl/engli...

stichtingb12tekort.nl/engli...

stichtingb12tekort.nl/engli...

stichtingb12tekort.nl/engli...

liauq profile image
liauq in reply to Litatamon

Hahaha...getting help from the doctors in B12 sounds like a good way to lose even more hair......

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