Fed Up with my primary: Good Morning... - Hughes Syndrome -...

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Fed Up with my primary


Good Morning from across the pond! I’m so fed up with my primary doctor! I’ve asked him for Hashimoto’s test and he said no! What’s it to him! Oh I know, he’s very cheap and probably doesn’t want to pay for equipment for anything! He said I don’t have hashimoto’s , but never asked me my symptoms! Loosing my hair, I have enough hair for 3 heads, so u don’t notice it, lethargic, depressed! Vitamin B12 deficient, but that’s cuz I had 6 stomach operations the first 5 in 5 years! Lol... I’m here! They all think we are mental cases! Well damn it were not! They had me convinced I was mental a few time ! The firs time I flatlined in the Cath lab twice! A very peaceful feeling! Glad they brought me back tho! The second time was when I lost my leg and they told me to go home with 5 purple toes! Two doctors did! Yes and I listened till it was too late! If u think something is wrong, and u know ur own body, Fight til the bitter end till u get what you wand and deserve! I’m going to My Hemotologist in June 8 & I know if I ask him to give it to me (Hashimoto’s test) Cuz I was under his care for 23 years for another Rare blood disease that causes thick blood! The nurses wud call him over w

Hen I was phlebotomistsized and tell him my blood is like sludge! I’d clot so very fast that wen nurse tuk the needle out and she knew she was in my vein, she pulled needle out and in shock said there’s the clot! So don’t end up like me anyone of you! I fight everyday of my life because I was born sickly! I’m fine with it I just “A Keep on Truckin!” Be positive and do what must be done and you’re your own best advocate! Godspeed and Be Safe!!! Hi Kirstin, Mary, and APS NOT SO FAB! Miss you gals and The Gentlman with beautiful words! I forgot his name! Hello to Y’all!

17 Replies

The test is not for hashimotos. You need to have T3 T4 and antibodies tested. Change your dr. For a few years now I’ve been telling you that. He’s an idiot. ❤️


Yes change your doctor, not sure how easy that is?!

The gentleman with lovely words is Dave, not on here so much, with personal issues to attend to, hopefully will back soon.

Take care xx

Debbweb01 in reply to HollyHeski

Yes DAVE miss him

MaryFAdministrator in reply to Debbweb01

Yes we all miss Dave, I will pass on your messages. also I ordered my own thyroid tests in the UK after I could get no detailed ones done with my local doctors, which is typical by the way, probably there are private companies in the USA, only an idea, it does sound like your doctor needs to help you more. MaryF

Debbweb01 in reply to HollyHeski

Thx Holly, How r you

HollyHeskiAdministrator in reply to Debbweb01

Hi Debs, thank for asking, I'm ok, like everyone living in a very strange frightening way.

Please keep taking your Levonox daily, would be dangerous to extend to every other day. Can't put a cost to our health but appreciate its costly.

Your husband is very strong to get through his latest ordeal but then what do we expect with you right beside him.

Stay strong and safe - as you say God speed xx


Hi Deb!!!!!

Great to hear from you!

You had the original Covid Toes, you trend setter, you... back before it was even trendy...😬(oh how horrible.)

You on Long Island

In the eye on the storm, I know you could do with a tiny dose of gallows humor only because I “know you.” You are amazing at “keep on truckin’!”

I like your plan to ask your hematologist for his opinion on testing your thyroid levels. Make sure he runs the in depth, full thyroid panel.

Can he recommend a new internist for you, one he works really well with? He can help you with that and can send your medical record to the new internist to help set you up as a new patient.

Stay well Deb. It’s been one heck of a year so far...but it’s starting to get better now!

Yes crazy year! Great idea about asking my Hemotologist! Yes it’s just very convenient to go to him! He usually does what I ask! But he’s mean no bedside manner! He’s an evil man How’s ur kids doing.


Too bad about his sour bed side manner!

Thank you for asking about our two children.

Our daughter is 28 now. She was due to get married June 13th, so next weekend. The wedding was due to take place on Princeton University campus- the wedding in the church on campus, then the reception after ( dinner and dance ) at Prospect House. Woodrow Wilson actually lived there when he was President of Princeton.

Of course that was all cancelled due to Covid 19.

It’s tentatively set for September 19th.

Her fiancé is German- so I’m not sure how many people can come. The quarantine time both ways is prohibitive with work considerations.

Our son just graduated from high school and and will attend Wesleyan University in Connecticut. Not sure how they will handle September / fall semester.

😊 thank you for asking. Like everyone else, life’s in flux.

Wow Wesleyan very nice Must be a smart young man! So sorry for ur daughter! You must be very proud of ur wonderful smart children! Godspeed

Hi Deb!

Saw it was you and I just had to say hallo from me and Sweden. You asked about the "Gentleman with beautiful words". I also miss that very smart and helpful Dave. Many of us "old"folks here do that. So sad this site is not the same anymore without APSnotFab and Dave.

You know that it is important to keep the blood thinned enough which is very difficult for us.

Here the hair is growing as we must not see the hairdresser and cut it. I have a friend in my age (76) and she has a lot of different colours in the hair now after 4 months.

I just want to wish you luck with the Hematologist on June 8 and stay strong as ever Deb!



Debbweb01 in reply to Lure2

Hi Kirsten I miss u too! Is APS not so fab not coming back and DAVE too? So upset? What about Mary? I this year am upset! My meds went up! My Lovenox was $140 a month! Now going up to $440 a month! What wud happen if I tuk my shot every other day!i can’t afford that and was miserable on Warfarin. They never were able to regulate me! My husband almost died twice! He got MRSA and went septic! Three doctors tried to make me kill him! They said he wud not make it thru the night! Well he did, but they made me stop all meds and any life support! I was able to c him because death bed visit! Plus he didn’t get the Covid! He made it thru the night! Amp by 2pm he was hungry and thirsty! I called nurse and said he’s hungry! I asked for food and water and they said no! I had no idea they’d starve him! I said put him back he saw me and fought to live! He left hospital after one week and next day at home got Pneumonia and survived! He will be 88 this month! I miss u and the other! Stay safe and healthy love u

Lure2 in reply to Debbweb01

Hi Deb,

You know I am not a Doctor and I am afraid you have to ask your Doctor in charge. You have got a good fighting husband I hear that!! Take care of yourself also is it is possible.

So sorry to read your continuing confrontation with that stubborn medical Brick Wall! I have, so far, been very happy with my docs at Cleveland Clinic. Many of us West Virginians with autoimmune, other chronic or typical geriatric illnesses make that 3-5 hour drive to get doctors who actually listen to us, carefully review records, and spend 45 minutes to an hour per patient visit. My cardiologist treats my a fib with low dose meds and diet and exercise regimens. The local doc wanted immediate heart surgery. Geriatric friends have had multiple, interacting meds reviewed and carefully reduced to only 1or 2. Now, I also know a couple of people who did NOT have good outcome from their CC consults, so... trying to breach that Brick Wall is a frustrating process and we patients have no infallible way to cross that Wall. Don't know if a CC trip is possible, but thought I'd share.

Debbweb01 in reply to GinaD

No CC clinic not yet! Anyone from NY wud have to quarantine for two week! How is it going for Cleveland with The Covid? My meds went up this year! My copay for my Lovenox was $140 now this year went up to $440 per month! I can’t afford that and I can’t go back to warfarin! Never cud regulate me on warfarin! I asked Lure 2 What wud happen if I tuk my shot every other day! Wud that be ok? Stay well and safe! Not safe here in NY with the riots! Godspeed

You might call CC for details re trip. I have not been since covid, friends went last week. Temp screens, travel history, etc.

Debbweb01 in reply to GinaD

Ok thx not in near future!

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