New to thyroid problems

Question

Hi new to all this and not on any meds yet, so any advise very welcome.

I have a pituitary adenoma (15 +years) about 2 years ago started to feel exhausted all the time, although could nt sleep, no sex drive:( dry skin, hair eyes etc.... Final got my endo to run bloods for thyroid and have had 4 lots done over the last 12 months, prolactin still high although on destinox 3 times a week,  1017 (109-557) tsh was  between 2-3 on first 3 bloods drawn but ft3 and t4 below range. 4 th set of bloods tsh was 6.7 ( 0.35-4.94) and free t4 12.3 (9-19.1) free t3 4.36 (3.6-6.5) Still feel exhausted, terrible memory.... 

Any advice before I see consultant again?

Thanks

goolarra · Answer

You might try posting a new question about the macrocytic anemia with that in the title.  I've never heard anyone mention it on the forum, but that doesn't mean you're the first.

It's true that TPOab can be somewhat elevated with other conditions as well.  Is he going to do other antibody tests?

chic37 · Answer

Back from the endo today, prescribed 50 mg thyroxine... 
Now testing for b12 + ferritin  due to macrocytic anemia....??? 

Anyone else had macrocytic anemia and is it caused by hypothyroidism??

He also said tpo was ok even though it was above range?? 

Wendy

goolarra · Answer

I don't know a lot about either of those.  Do you have the actual copy of the lab report?  Was there no range on that, or did your doctor's office just not provide it to you?

I know that a one shot cortisol test is considered inadequate.  A 24-hour saliva or urine test is more accurate.  You spit into a cup at four specific times of day and get a reading for each.  Cortisol should be highest in the morning, cascading down as the day goes on.  The 24-hour test is the only way to pick up what might be happening throughout the day.

chic37 · Answer

Just wondered if you have any info on acth and testosterone ....

My acth was 24 (<46)
Testosterone <7 but no reference range given
Cortisol was 286 again no range given

All done at 9.20 am

I can find very little info about these, so any input would be appreciated...

Thanks in advance

chic37 · Answer

Goolarra.... My thoughts exactly ... I will see him on 31 st and and see what he suggests... I think he deals more with diabetics as I seem to tell him more about pituitary adanoma than he does me, but unfortunately all the endos where I live specialise in diabetics .... So quite frustrating 

Thanks for the info, I will detail what the out come is after my appointment

goolarra · Answer

You might have had a couple of things going on.  Early stages of Hashi's can be characterized by swings from hypo to hyper.  As the antibodies attack the thyroid, the dying cells "dump" hormone into the blood causing spikes in the hormone levels.

Although it sounds like a contradiction in terms, you can also have both Graves' and Hashi's.  Typically, Graves' (hyper) is dominant at first, then Hashi's rears its ugly head later.

I think your doctor gave you some bad information.  The pituitary is the master gland that controls the whole endocrine system, so a pituitary adenoma could affect any number of things.

chic37 · Answer

I was full of energy for many years with just the odd days usually that time of month when I could sleep solid for 2 days straight and then be buzzing again... If not hyper it was defiantly hormone related.... Tried to talk to my pit doctor about it lots of times and would just say none of it has anything to do with pituitary adanoma as they have no symptoms and would not effect other hormones!! I know now that that's not true...

goolarra · Answer

Doctors are split on when to start treating Hashi's.  Some want labs to be out of range and symptoms to have appeared before treating, others feel it's best to treat earlier and avoid all the symptoms.  Antibodies can be present for years or even decades before enough damage is done for you to become hypo.  It shouldn't have to get bad.  Your doctor should monitor FT3, FT4 and TSH EVERY time labs are drawn.  TSH simply is not sufficient by itself.  What's most important, though, is your symptoms.  The point of treatment is feeling well.  If your doctor insists on keeping you feeling sick, you may have to shop for a more enlightened doctor.  

It sounds like you went through a hyper phase that was quite long???  How long did it last?

chic37 · Answer

Hi next appointment is 31st October... And yes very frustrating and so much info on the web just makes it more confusing!!!

chic37 · Answer

Thank you for your comment, I hope my endo will do something on my next visit (31st October) I also had MRI done, I presume he is checking to make sure my pituitary is behaving and not causing more problems.... 

After researching I thought hashi, but have read lots of stuff about them not wanting to treat it?? How bad does it have to get? ... Looking back I think I may have been having these issues for a long time but more hyper, I brought up 4 children, worked full time and could easily manage on 4 hrs sleep and still be buzzing...  Now I'm in bed at 10 and have to drag my self out of bed at 7.30 to go to work, still feeling exhausted, ( ifit wasn't for work I think I could easily sleep all day too) and I'm terribly  unsociable:/  just want to get in from work lock the door and not see anyone... I hate feeling like it...
It is so frustrating I feel like I'm a hypochondriac, so don't talk about it...

Also had a tah in January and reading the info about  being hypothyroid  and heavy painful cycles makes me think I could have been spared.....

goolarra · Answer

If your FT3 and FT4 were below range, you were not just hypo, you were VERY hypo.  In your case, due to the pituitary adenoma, TSH (a pituitary hormone) is totally unreliable as an indicator of thyroid status.  Your doctor should be treating your low FT3 and FT4 and your symptoms.

Currently, your FT4 is at 33% of range.  Many of us find that FT4 has to be at about 50% of range or we still have hypo symptoms.  Your FT3 is at 26% of range, and the rule of thumb for FT3 is upper half to upper third of range.

Now that your TSH is above range, I would think (hope) that your consultant will be willing to prescribe meds.  

Thyroid peroxidase antibodies (TPOab) are one of the markers for Hashimoto's thyroiditis.  Elevated TPOab (which yours is) indicates Hashi's.  Hashi's is an autoimmune disease and the most prevalent cause of hypo in the developed world.  You have lots of company, myself included.  With Hashi's, the antibodies keep attacking your thyroid's ability to produce hormones.  More and more thyroid function is lost until there is none left.  Elevated TPOab should be further confirmation to your consultant that you need to be treated.  

My best advice to you before the consultation would be to write all your symptoms down.  You can google a complete list of hypo symptoms.  You'll probably be surprised to discover that you have even more than you'd thought.  Writing them down is key so that you don't forget any while talking to your doctor.