Low DHEA / Low Testosterone / Thyroid Nodule & Pituitary Adenoma - Female :(

[Sparkle44]

I am soooooo upset!!

I have been battling with a whole range of symptoms for over a year now and after becoming a literal 'lab rat' in terms of blood tests / MRI's / CT Scans / Ultrasounds / Cannulated Prolactin Tests and Short Synachthen test I am drained of all life!!!

My hormones are out of balance and I was referred to Kings College Endocrinology and they basically told me a woman does not need testosterone and tried to discharge me! I asked for a second opinion and was referred to Guys where I asked to be seen by a female consultant. They sound that my Prolactin was elevated as well as other hormones being below the normal range. They found a 3mm adenoma on my Pituitary but yet again I am being told that it is unlikely to be responsible for my symptoms. I am at a complete loss!! I feel like death and I don't know what else they want to see before they start treating me???

-DHEAS:

0.9 umol/L (1.6 - 7.8) 27/12/2017

0.6 umol/L (1.6-7.8) 15/03/2018

0.7 umol/L (0.9-11.6) 02/05/2018

0.6 umol/L (0.9-11.6) 18/07/2018

-Serum Testosterone:

0.28 nmol/L (0.29 - 1.67) 03/01/2018 <0.5

0.3 nmol/L 07/02/2018 (Kings)

<0.5nmol/L (0.0-1.8) 18/07/2018

-Free Androgen Index:

0.6 (1.0 - 6.0) 03/01/2018

0.6 (1.0 - 6.0) 03/01/2018 0.5 07/02/2018

.

-Prolactin:

532 (102-496mlU/L) 02/05/2018

465 (102-496mlU/L) 18/07/2018

-

Cannulated Prolactin Test:

602miu/L (baseline), 543miu/L (30mins), 626miu/L (60mins)

Others:

eGFR-

64(70-130mL/min) 02/05/2018

64(70-130mL/min) 18/07/2018

64(70-130mL/min) 02/08/2018

Osmolality -

283 (285-295mOsmol) 18/07/2018

Creatinine -

83 (45-84umol/L) 18/07/2018

84(44-80umol/L) 02/08/2018

Creatinine (Urine) -

31.60 (2.47-19.2mmol/L) 21/06/2018

Ferritin-

24 (22-275ug/L) 18/07/2018

Serum Folate -

3.6(3.1-20.5ug/L) 18/07/2018

Inorganic Phosphate -

0.71(0.81-1.45mmol/L) 02/08/2018

ESR -

11mm/h(1-12mm/h) 02/08/2018

Active B12 -

>128 (25-108pmol/L) 18/07/2018

Problem / Diagnosis:

•Hyperprolactineamia – dated 23/07/2018

•3mm part-cystic hypoenhancing left pituitary lesion / Adenoma

24/07/2018 (Pituitary MRI results)

Just having a moan as I feel that low hormones in females are not taken seriously. I am 45 years old.

I explained my symptoms of lack of libido / vaginal dryness / zero sex drive / fatigue / lethargy / lack of energy / peripheral blurry vision (left eye) / thinning hair / acne / blemishes / forgetfulness / nails tearing / some night sweats …. the list goes on. I have stressed that my priority symptom is extreme fatigue.

It is clear from medical research that these symptoms are directly related to Low DHEA / Low Testosterone / Pituitary Issues.

It would appear that despite having blood tests which have shown my levels to be out of the normal range, and a Pituitary MRI has shown I have a pituitary lesion that these test results are being minimised? Despite these issues being Endocrine issues they do not seem to consider them to be causing my symptoms? I am really struggling to understand the rationale for this. I understood Endocrinology to treat people who suffer from hormonal imbalances, in order to restore normal balance. My Hormone balance has not yet been restored to normal?

I don't know what else to do!!

Wendy

[greygoose]

Nine months ago, you posted your thyroid results. Your TSH was elevated enough to say that your thyroid was struggling. But impossible to tell how low your FT4 was because you didn't give the range. Have you had them retested since then? Have you had your FT3 tested?

If you have an adenoma on your pituitary, you TSH might be incapable of rising to a level that stimulates the thyroid to make thyroid hormone. So, your FT4 could be even lower by now. Which will probably mean that your FT3 is low. And it's low T3 that causes symptoms like the ones you describe.

So, if you've had them retested, post the new results - with the ranges - on here and let's have a look. If you haven't, then it might be a good idea to get them retested.

[Sparkle44 in reply to greygoose]

Hi Greygoose,

I had them re-tested on the 18-07-2018 and the results were in the normal range, as follows:

TSH: - 2.73 (0.27-4.20mlU/L) Previously- 1.85 on the 02-05-2018

Free Thyroxine Level: - 16.2 (10.0-23.0pmol/L) Previously- 16.9 on the 02-05-2018

Free Tri-iodothyronine level: - 4.1 (3.1-6.8pmol/L) Previously - 4.5 on the 02-05-2018

Androstenedione: - 1.8 (1.4-14.3nmol/L)

ACTH Level - 11 (no normal range given?) Previously - 6 on the 02-05-2018

Oestradiol - 105 (no normal range given?) Previously - 584 on the 02-05-2018

Cortisol at 5:30pm - 102 (no normal range given?) Previously - 114 on the 02-05-2018

HbA1C - 5.4 (4.0-5.9) on 02-05-2018

I am not sure if the FT4, FT3, or T3 are amongst those results sorry?

Let me know what you think.

Thanks

[greygoose in reply to Sparkle44]

FT4 is Free Thyroxine. And FT3 is Free Tri-iodothyronine.

So, the Frees are decreasing slightly. I think you do need to keep an eye on them, see what the trend is.

[Sparkle44 in reply to greygoose]

Just found a T4 blood test result that my GP did on the 02-08-2018:

14.8pmol/L (12.0-22.0)

[StillEverHopeful]

Your ferritin is low in range, when mines that low I am fatigued.... perhaps you are low in other vitamins & minerals. I’m still learning about T4 &T3 from the lovely folks here but know I also have to keep an eye on vitamins and minerals.

Hope you get sorted.

[Sparkle44 in reply to StillEverHopeful]

Hi, thanks for your message. This is a great site for information and support. I have emailed my GP to query my Ferritin and Folate results. She said she was prescribing me iron a few weeks ago but when I took the prescription to the pharmacist it wasnt on there and then I forgot about it. I will give her a call tomorrow. Thanks, Wendy

[mourneadventurer]

I emphasise.

Perhaps have a look at Dr Carolyn Dean’s work, some great podcasts. ReMag and ReMyte are picometer Magnesium and minerals required for optimum thyroid function.

I’ve just started these 2 products and I’ve noticed a significant energy lift.

I’ll probably add in the corresponding vitamin containing B6,9,12 at a later stage. BotanicaHealth sell these products in the U.K.

Failing that contact the ThyroidUK office for the list of Functional practitioners.

[Sparkle44 in reply to mourneadventurer]

Will do, thanks!

[Lulu2red]

My advice would be to get a complete copy of your medical records from Kings & Guys. There should be no charge if you quote your exemption certificate number. Get all your GP's notes and all blood tests from the hospital and GP. I was misdiagnosed at Kings 17 years ago. Endocrinologists are ten a penny, you need to find a good one. How, I don't know? But you need to be armed, keep copies of everything going forward as it happens. You are going to have to take control in order to get better. It's outrageous they are trying to fobbed you off. If you have a pituitary adenoma, nodule of course it's causing your issues!!!! It could be Cushing's or Central Hypothyroidism so you need an expert in these two diseases. The thyroid blood results in this case are not helpful you need to go by your symptoms and treated accordingly. Your problem is not the thyroid gland itself but the feedback axis from the pituitary to the hypothalmus which tell the throid what to do. I am only a layman but these two conditions give someone serious debilitating symptoms and no easy fix. I was considered a ' complicated case' and told there must be something else wrong with me and despatched from King's to remain ill for the next 17 year's, still recovering. Don't let them get away with it. If you have a pituitary issue lot's of your hormones are going to out of whack. Don't give up, it's a long road I know. I used to say to myself, " please God help me, there must be an Endocrinologist out there who had the answer". But it's like looking for a needle in a haystack. I wish I could recommend one, sadly not. Once you have your history you could go private if you have enough money, but be aware you still need an expert in pituitary/thyroid, not a diabetic Endocrinologist. Wish you all the luck in the World.

[Lulu2red in reply to Lulu2red]

Read your profile, your lyphodema is not a separate condition, it's a symptom of your other hormone imbalance. I have seen a woman with such swollen legs she could not walk. All resolved once by a miracle an out of hours doctor diagnosed her with a thyroid condition. She had been left like that for years because her GP said her bloods were in normal range. My Endocrinologist said he did not want to read the long list of symptoms I had typed out. He said he was a scientist who only went on blood results as they are facts. If you meet one like him sack him immediately!

[Sparkle44 in reply to Lulu2red]

OMG!! That Endocrinologist should not be working!! It just beggars belief!! I was told that women dont need testosterone and he gave me research from the USA which was outdated!! I knew in my gut that he was dismissing my symptoms because I am female which is why I insisted on a second opionion from a female consultant. It has taken me a little while to get past the 'lets all stick together attitude' and the EGO rubs for each other as consultants and hospitals. I think I was initially being pacified in the hope that they would fine nothing wrong with me... then hey presto.. raised prolactin and a pituitary tumour and now they are lumbered with me... They were not going to prescribe me meds as it would be at a cost to the hospital and not my GP... If I didnt laugh I would cry!! Thank fully she changed her mind, but I am now left feeling like I cant ask about the dangers of the tablets I am taking and are there other options as it has taken such hard work to reach this point!

How are you feeling now and are you on the right meds after 17 years?

[Sparkle44 in reply to Lulu2red]

Hi,

My heart sank when I read that you got discharged from Kings to suffer for another 17 years. Its outrageous!! I have kept copies of everything and was just saying to a friend today that I want to see my records as they made me feel like a hypercondriact (not sure I have spelt that properly It is only with sheer persitence that I have got this far! Imagine... when I am begging them for help as my extreme fatigue results in me spending the whole weekend in bed just so I have enough energy to work on Monday and to pay my mortgage. Somedays I feel like I dont have enough energy to breathe and I feel on the brink of collapse!! You made an interesting comment at the end about needing a pituitary thyroid Endo and not a Diabetic Endo. I will look into this further as Guys is defo Diabetes & Endocrine. After I sent them an email yesterday highlighting all my declining out of the range blood results I received a phone call saying that I was being prescribed DHEA. I have now been prescribed 25mg of Prasterone DHEA. There has been no discussion about side effects or what to expect so I am a little nervous, but I am thinking I cant feel any worse than I do right now, right? So I took my first one this afternoon... I have 2 very alert kitties who have become more clingy since I have been ill. I wish I could train them to call 999 if anything happens, but I think they would start poking me with their carefully prized paws if they get concerned

Thanks again for taking the time to respond. It helps that I am not the only one to experience this. Best Wishes! Wendy

[Lulu2red in reply to Sparkle44]

I empathise totally, interestingly when I told the Endocrinologist at Kings I felt like I was slowly dying when they said 'normal range'. They told me I couldn't be that ill because I work full time and was raising 2 children totally on my own, most patients are too ill to go to work! All this from a woman's mouth. Basically they prodded and tested me, scratched their heads and sent me on my way saying go private if you want anymore help. I told them I couldn't afford it. I asked for T3 they said there was no evidence it works any better than T4. Well fast forward 17 years on T3 only I am on the road to recovery. Reading another reply I am sorry I mentioned Cushing's, I agree for you with your results unlikely, but they have tested me for it over and over again. I think you might have two things going on at the same time.

pituitary.org.uk/informatio...

See if you think your symptoms fit. I would definitely take the medication you have been given. But I am not a fan of T4 because it requires conversion. If your pituitary gland has a problem with telling the thyroid what to do which it obviously does, taking T3 gets straight to the job with no interference. That is what you need along with other hormone replacement. I do think self medicating would not be ideal given that your condition is more complicated than straight forward hypothyroidism. You will have to fight for it. You are really to ill to work, I know I was but kept pushing myself. Looking back I should have given up work and claimed disability until I got better but was so worried about losing my home. In the end I sold my lovely house and moved 75 miles away and bought a smaller house outright for cash. Of course I had to wait until my son was through University. I should have done it sooner but my daughter was at secondary and didn't want to disturb her. Remember there is no shame in claiming benefits, though the propaganda would make us feel otherwise. You could take a break from work until your health is resolved. I think you should be referred to a Professor of Endocrinology. You are right they all have massive ego's, but a Professor should know more than his rookies. Demand the best. Travel across the country if you have to, in the end it will be worth it. You cannot put a price on your life. Please if you feel close collapse present yourself to the nearest A&E. Take care of yourself.

[Sparkle44 in reply to Lulu2red]

I adore you Lulu!! Such caring words! Oh how I dream of stopping work and then I think one day I am going to collapse and be forced too anyway! I don’t get paid if I don’t work I am locum but I am thankful to be in a post where I can work from home the majority of the time so the extra hour in bed is a God send! I felt worse than ever when I woke up this morning. Not sure if the DHEA contributed but oh so tired!!

You have done fantastically well and I am so pleased you are on the road to recovery!! I hope you feel stronger and healthier everyday!

I am waiting for a letter from my consultant explaining the next step then I will take it from there. Just need to recharge my batteries for the next battle!!

[Lulu2red in reply to Sparkle44]

Private message me if you want some moral support. I am not an expert by any means but I smell a rat few yards away. I am worried you have adrenal insufficiency, which Endos deny is an issue a but you need this addressed before thyroid hormone is added. Please dial 999 your cat's can't dial lovely as they are x

[Lulu2red in reply to Lulu2red]

Definitely take the hormone they have dispensed x

[Sparkle44 in reply to Lulu2red]

You are very sweet thanks!!

Not sure how to private message yet but will have a go! I am having the short synacethen test again on the 28th. I’m wondering if DHEA tablets might make a difference by then. We will see

[Lulu2red in reply to Sparkle44]

I've had this test. They said it's nothing to worry about and you should feel no reaction. Think Endocrinologist was trying to rule out Cushing's or Addison's , not sure. Anyway I passed according to him. But I felt really unwell when they pumped me full of whatever it is. Horrible feeling. Nurses flapped around saying I should not react this way. It passed but don't want that again. Just wanted to warn you, don't be afraid I survived didn't hurt just felt a huge surge in my body I had no control over. I passed but wonder if I was borderline. Good luck, it will be done in hospital so all hands on deck. Don't be brave, cry for help of you need it. I did. Apparently adrenal problems arevnot recognised unless your result shows Addison's. The fact they are repeating the test is a good sign. I read of you read 6 you pass if you read 7 they think you are about to pop your clogs. You need to interpret the results with your previous one. Keep a record x

[Sparkle44 in reply to Lulu2red]

Thanks Lulu will keep you posted x

[Howard39]

Hi

I have to agree with greygoose re your thyroid results.

Cushings? That’s massive cortisol so without a range I’d say v unlikely.The nhs ( she says from memory) ranges tend to go up to 450. If I am right I’d say yours is on the low side.

To be certain I’d have a private saliva test 4,over a day. SST test pretty unreliable.

What I don’t get is why are they repeating everything over and over. Your dhea is low! What’s it going to do rectify itself?

Low dhea ( and cortisol) will make you v tired. It can be treated with pregnenelone. If your cortisol too is low( as I think) then adrenavive would help both.

Your folate and ferretin are too low also.

Ideally creatinine is say 65/70 but you’ve enough going on without concerning yourself with it a tad high.

And yes women need testosterone- blimey they should be giving you some help increase it.

Got to agree -environmental doc.

You’d be fine with my specialist but she’s full.

Sort out what you can and look around for someone more clued up.

Best wishes

[Sparkle44 in reply to Howard39]

Hi Howard, thanks for your message. I too have wondered why they just love to keep repeating the same tests. Its like they are expecting them to reduce on their own or maybe it was a bad batch of blood Honestly!!

The good news, is following my email chronology to the consultant yesterday they called me last night to tell me I have been prescribed 25mg of Prasterone DHEA (one a day).

She wants to monitor my adenoma by doing another MRI in a year.

I am really hoping these tablets work!!

Thanks for all your advice it is greatly appreciated!!