GP refusing treatment and I feel like an imbecile. What should I do?

Hormones
1

I went to my GP a few months ago prepared to finally inform her of all the things I felt were going on/wrong with me. I let her know that I felt that I had IBS-D (she agreed), PCOS (she stated it "didn't really matter&quot, major depression and generalized anxiety (she agreed). I am currently 23, and I brought up PCOS because it runs in my family and I had mentioned to my mom that my hair was falling out quite a bit. She told me to ask about PCOS, and given my painful periods and an incident where we think a cyst may have burst, I decided to ask. My GP felt it didn't really matter whether I had it or not unless I was planning on children, so that was the end of that. I did not discuss any symptoms there.

Due to my mentioning my depression, she stated that although I was too young for her to want to normally run blood tests, she would do it just to make sure my thyroid was working, while also starting me on an anti-depressant. I thought nothing else of it, as I've never read up on thyroid disease or issues and had attributed many of my symptoms to depression and anxiety. I have a mental health background, so it made sense to me that my severe fatigue and other symptoms would be related to this.

When my blood tests came back, I had a TSH level of 5.1 and a Free T4 of .69. She stated that this meant my thryoid function was "borderline" and that she would want to retest in a year. However, I went in for a follow up on my anti-depressant about a month after this and decided that I would ask if we could try a trial treatment. After reading up on the symptoms, I realized that these felt very much like me. I have been incredibly depressed, have gained nearly 50 pounds in only a handful of years, and have been so fatigued that I struggle to get out of bed and do things in a very literal sense beyond my low motivation caused by depression. I have thin hair that falls out frequently and very brittle nails. After reading up, I felt that a trial might be worth it.

My GP did not feel the same. She stated that she would retest my blood today, but that she wanted to wait on treatment, because it could contribute to osteoporosis or make my anxiety worse. When my results came back, my TSH was 8.2 and my Free T4 was .72. At this point, she stated that "most likely" my thyroid would fail "over time" and that I would then need thyroid treatment and that she wanted to retest in six months. 

At this point, I was feeling incredibly - stupid? but also upset about this. I didn't want to question her knowledge on the subject, but I felt like my concerns were being dismissed. So, I responded and informed her that I was still seriously struggling, in particular with my fatigue, and that I did not know how to deal with the symptoms until she decided treatment was appropriate. She decided to up my anti-depressant dose, but essentially repeated her earlier comments about osteoporosis and dismissed me with, "It is not appropriate to use thyroid hormone when it is not indicated as it can cause other problems." At this point, I felt even worse. While I know that some of the symptoms I communicated to her were definintely me needing to up my anti-depressant dosage (something that I did tell her in my message), even when my earlier dosage was working, it did not treat some of my core concerns (particularly the fatigue/exhaustion). Her responses have made me feel ignorant and pushy, and while I am not a fan of self-diagnosis or trying to use the internet to determine what's going on, I feel like it cannot seriously be this worthy of dismissal?

From what I have read, I am clearly symptomatic and my blood tests indicate at least subclinical hypothyroidism. I also have no idea why my thyroid is "probably" failing or if there is a reason behind it? I feel lost here. My best friend has recommended I get a second opinion, but I struggle so much with going to the doctor in the first place and given my doctor's response to my questions, I'm concerned with how a request for a second opinion would even be received. I'm really sorry to go on so much, but no one other than my best friend really knows what's going on, and I have no idea what to do or how to feel about my results. I feel like I am somehow lying or making this all up and that my symptoms are just my being lazy, but at the same time I know that in reality that's not the case. I just don't know what to do here.

2

As a note, she also decided to test my Free T3 the second time, and it was at 3.3, or "normal."

3

Hi,

I'm not an expert on the subject but I can share my personal experience with you. I am hypo and mine is caused from my pituitary gland not properly functioning. It does not produce enough TSH causing my thyroid to be hypo. I'm in the category whereas my labs reflect I only need the low dose of levothyroxine (50) and last fall, my endocrinologist said we were moreso treating my symptoms then anything.

One thing I can suggest is perhaps asking your GP if she could refer you to an endocrinologist for future thyroid testing. It will most likely take 2+ months for your appointment though however, that gets that door open "now" and should make sense to your GP as if she feels your most likely looking at future problems, you will want/need an ends rather than a GP. While some GPs may treat thyroid problems, endo's are skilled and specialized and can go that extra step in knowledge and experience over most GPs.

The fatigue is definitely a battle. I hope you get some answers soon and get to where you feel better. I'm sure your GP has did full labs but make sure as several things can cause fatigue. Even depression can add to that ... speaking from experience. However, no one knows how you feel better then yourself so keep being your own advocate, you're doing an awesome job.

Debie

4

Hi Birr, sorry you're having such difficulty. Unfortunately this is typical for thyroid patients. By the time they get a diagnosis, their whole body is failing because when thyroid function is low, the body starts shutting down the less important functions, you have your basic system failure, and it's impossible to figure out what's what. All the symptoms you speak of can accompany thyroid disease. So you aren't  dillusionwl or anything of the sort. 

My my experience with severe and advanced thyroid disease, has been that I tried 8 different medications and none worked properly because none are bioidentical, and cause more problems than they solve. I have a giant cyst on my thyroid that screams thyroid disease, so I kept going back to that through the many referrals to funks and other unrelated specialists until I finally got to an endo... 

After 5 years of meds that nearly killed me, I'm starting to recover with TCM, herbs, diet, cleansing, supplements,  and amino acid therapy. I've been able to shrink the cyst and feel much better now that I found a combo of supplements that work.

Others have had some success with meds, but please do read through the many thyroid and levothyroxin posts so you know what you're dealing with. Others have had good success with gluten free high protein diet, which is helpful but not enough for severe thyroid disease.

One thing is for sure, you cannot sit back and do nothing. Your thyroid controls the metabolism of every function in your body and when not working properly, results in premature aging. You are young, be disciplined and diligent with your diet and overall health, while taking steps to deal with the hypothyroidism. Just because your blood work appears to be sibclinical, doesn't mean it's minor, you can have sibclinical blood and still have advanced thyroid disease, as your body shuts down functions to preserve energy for the brain, heart, etc. 

There are many people this site who have tried various treatments. So if you find something that you feel might be useful, feel free to ask folks here.  Many of us have struggled and are delighted for others to benefit from our difficulties.

Good luck to you!

5

Go to that same dr and tell her,  you're  requesting to see Endocrinologist  (they are just GPs)  If she asks why  just say I want someone who specialise in this area.

She can not refuse you!

 

6

A TSH of 5.1 is not "borderline". It's high, it means you are hypothyroid and need to try medication. Definitely ask to see an endocrinologist.

7

I agree with everyone else...  Find a different doctor!  Perferrably a endocrinologist.  It's seems that you definitly have a thyroid issue.  There are plenty of good doctors that will treat you now, especially being you are symptomatic.

8

Amanda You can also self refer privately just to get the ball rolling then go back to the NHS!!!  What do you think?

9

I agree that TSH of 5 is very high. I have severe advanced thyroid disease and my TSH never shows above 3. At a TSH of 2.5, I'm exhausted 24/7. I suspect that my TSH may have been higher at some point, but with undiagnosed hypothyroidism for decades, it's likely that the pituitary gave up trying to stimulate thyroid function.

Also, while Grave's will often show very high TSH, Hashimoto's will not always show super elevated TSH. an ultrasound will often. Diagnose throid disease when blood tests don't show it conclusively. This is where an endocrinologist is helpful. 

Like anything, you'll have to find a really good endo, as not all are created equal. 

I caution you though, that meds are not great for hypothyroidism, and the side effects are often worse than the disease.  So also do some research on natural treatments while you're waiting for your doctor appointments.

 

10

I've requested a referral to an endocrinologist, so now I'm just waiting to hear back from my GP on the matter. My TSH is currently at 8.2 and I have been struggling pretty severely with energy, making it hard for me to go into work and also get ready for my move into a new place. 

My GP recommended that I stick to a diet that consists mainly of meat and vegetables, as she feels that if I have PCOS it may be turning anything with sugar straight into fat. I'm also going to attempt to avoid gluten when I can, but I have struggled with my diet some because of my lack of energy and motivation. It feels so impossible to cook or shower or even get out of bed.

I really appreciate everyone's advice. I'm so hoping to get this addressed soon.

11

Have your vitamin B12 and D levels been checked? Haveyou hd the parathyroid hormon test done as well as elctrolytes and a full bone profile done to check for parathyroid disease?

​Try not to worry .These conditions are treatable, it isjust the struggle to get the right diagnosis.

12

No, the only tests my GP has run were cholesterol, triglycerides, TSH and Free T4. The most recent test was just my TSH, Free T4, and Free T3. After this, my GP decided we should just recheck my levels in six months, so nothing else has been done.

13

With a TSH above 8 you are well into hypothyroid territory. You have not actually mentioned medication. Are you on anything? You should be for sure, because while some people doubt it efficacy, for many it is the answer. By all means try diets and supplements but do not miss out on conventional medication if you have not tried it.

14

The only medication I'm on is birth control and Lexapro. My GP does not feel that I currently need any sort of thyroid hormone/medication, I have requested trying a trial twice now, but she has refused to prescribe anything.

15

Get a new GP. TSH of 8 isn't even a question.

16

Well that is, frankly, incredible! The high end of the normal range for thyroid is 4, so you are waaay over. (High TSH means low thyroid). You can easily check this using Google or Wkipedia.. You really need to challenge your doctor on this and demand to see an endocrinologist, or simply find another doctor.

You at least owe it to yourself to try the medication, which goes my the names of Synthroid, Levothyroxine, etc., because it absolutely do work for many people and you have the classic symptoms. Do not let your doctor fail to provide the first-line treatment provided as a matter of course worldwide!

17

Yes, one can go private at a pop of £200 and over... but why should you after to when you've paid into the system. After saying that, if one does the research it's possiable to find a Dr who's t3 and t4 friendly...... Where as NHS (majority) Dr's only prescribe t4 Levothyroxin and that's fine has long as you don't have a conversion problem..... otherwise your snookered.

18

I agree Amanda Ubnbelieveably two drs a GP and the consultqant endo surgeon refused  to do an USS desite a multinodular goitre showing up on a  CT as an incidental finding and me having th signs and symptoms of a thyroid disorder with raised tpoas and low tsh etc.

​i WSS frantic with worry in case I had thyroid cancer.I was absolutelysastounded at their cllous treatment of me, one GPsaid that nodules are not USUALLY  malignant . To which I responded oh so they can be then.

U self referre to a Harley st specialist who scanned me the sae day and found twent non cancerous nodules.

Supposing I had not got a little bit of money put to one side for a rainy day?

The USS cost me over £399 and the consultattion plus bloods a further£700.

xxx

mnttowhich i RESPONDED .

 

19

amanda sorry about the typos his laptop is driving me mad playing up.

20

Yes, I felt that with my symptoms and the continued elevation of my TSH that treatment might be appropriate, but she has been incredibly resistant to the notion and has repeatedly told me we will just keep retesting. At this point, I'm not sure what she's waiting for. In only a month, my TSH jumped from 5 to 8 and yet she wants to put off another retest for six more months. I feel I've done all I can with her in requesting treatment.

I contacted my GP and let her know that I wanted a referral to an endocrinologist. Unfortunately, there are only two endocrinologists anywhere near me and one is not accepting new patients. The other requires a referral. If I don't hear anything by tomorrow, I'll be asking what else can be done so that I can see someone ASAP. I still don't even have a reason as to why my thyroid is failing.